"I found the culture in Bangour to be much more about people, to be much more about the person and not so much about the illness. I found it more about the people when I came through to Bangour."
John was born in Edinburgh in 1964 and lives in Bathgate, he started training as psychiatric nurse in Edinburgh Royal in 82 and qualified in 86. He worked as a staff nurse in the Royal Edinburgh Hospital for 2yrs then came to work in West Lothian and has worked in community mental health services since 1988.
John talks about ages of people he has worked with, all adults, he started by working with elderly people for a few months and then went on to work with all adults aged 16-65yrs. Discusses working practices at his various workplaces and training in statutory duties and medication.
"I found the culture in the Royal Ed to be a bit, us and them, I found that there wasn't a huge emphasis on the relationship with the patient, because it was inpatient services, you didn't really have a lot of time to focus on rapport and establishing relationships and engaging with people. You spent a lot of time assessing from a distance and treating symptomatically, so if someone was hearing voices, instead of sitting down and speaking to them about that and how it felt, and what was happening for them, your typical response would be to go and get a PRN and give them some extra Largactil or Mellaril, or whatever it was in those days….. I found that a restrictive practice, I didn't like a lot of what I saw in the Royal Ed, I didn't like the attitude towards patients."
John talks about specialist training in rehabilitation psychiatry that started in Royal Ed but had a placement in Bangour Village Hospital.
"I found the culture in Bangour to be much more about people, to be much more about the person and not so much about the illness. So although I learned a lot about the illness and the technical aspects of the illness and the pharmacological treatments of illness, which was very helpful, I found it more about the people when I came through to Bangour. I also found the opportunity to work in the community gave me opportunities to actually connect to patients and understand who they were as people better because the culture in West Lothian accommodated that more in those days."
John talks about feeling valued more in Bangour than Royal Ed but acknowledges he was a junior in Royal Ed and was perhaps just a number. Where as in Bangour he had a specialist role to develop community services. It felt innovative and developmental, and that he was listened to and valued due to this.
John discusses the idea of friendship with the people he cared for:
"One of the things when you train to be qualified/trained to be a psychiatric nurse, it's drummed into you that your not your patients friend, that you can be friendly, and you can have a lot of care and compassion, that's perfectly appropriate but to have a social friendship that's something that would contravene the professional standard. So I didn't make friends but what I did do was I established, what I think were friendly, respectful, rapport with people that have been longstanding, so I had a professional relationship , which, a lot of times, has been a long standing relationship, but I wouldn't go out for meals with somebody or go to the pictures, and meet up to have a drink or stuff like that because it's not social friendship, it's a professional relationship, and I have to be clear about what the differences are."
John discusses types of activities people did in various care settings:
"In the Royal Ed there weren't any, and that's one of the things I didn't feel was okay, so in the units you might have a table tennis table, there might be trivial pursuits to play and I tried to do those things with patients because I felt that was a way to connect more on a human level rather than being focussed on symptoms and medications."
"When I came through to West Lothian I felt it was appropriate to engage in activities which fostered and supported the development of informal social networks, so we would have social afternoons, social evenings, played bingo, maybe have some music nights, again dominoes and card games stuff like that, and then we started to develop more formal groups. You know, hearing voices groups, anxiety management groups, things that provided particular technical insights for people who had particular needs. So somebody who was suffering from an anxiety or didn't know how to help themselves with that, we would set up a group to look at, what does anxiety look like?" "How does it affect you?"
"If someone was struggling with auditory hallucinations and didn't really know how to cope with those and found them very intrusive then we would set up a group to help people look at that and explore how to manage that better. So it was a mixture, some activities were social in their focus, some were therapeutic and some were about gaining insights and skills so people were more empowered to make choices for themselves. Some were educational, we made partners with West Lothian College so they would come in and do some groups with us, so some stuff I would run myself, other things would be run by likes of college tutors or Adult Basic Education something like that and sometimes it'd be a formal group and you'd have a therapist involved for psychotherapy groups or things like that, so it's got a whole mixed range. And I think that was probably quite appropriate in it's time."
I asked John if the people he supported were involved in their local community out with the setting they provided care for them.
He describes this as being quite awkward and difficult:
"We tried quite hard to support people to be involved in their local communities but one of the reasons we set up places like Bathgate House is, there weren't really, local communities weren't comfortable with mentally ill people, and people who were mentally ill found it difficult to get involved in groups like that, some were better than others so it was an individualised experience. So some people that I worked with might attend like a bowling club or something like that for example and be quite accepted there but I remember examples, I worked with a chap who was quite a talented artist, I felt he was quite a talent, and he was very interested in involving himself in an art club, so I made some contacts with people that I knew in Community Education and found a local art club for him to attend and when he started to attend nobody was rude to him, nobody told him not to be there but they just stopped attending themselves. He ended up, the art club folded, and he didn't have anywhere to go. I found that a really depressing experience because although the chap concerned, he could be a little , odd at times, due to the mental illness he had but actually most of his oddness and bizarre look was because of the side effects of medications, it wasn't him, and I felt that he'd been treated very badly, so we ended up using Artlink almost exclusively for all the art classes because Artlink were a service who we were commissioning to deliver a service directly for our clients, so our clients had a closed protective environment in which they could do their art work and theirs a lot of therapeutic value in doing that. I would much rather these groups were open to members of the general public, and Artlink do actually try to do that, so rather than our people, our clients attending local groups, we run the groups and local people can join in with those and that seems to work a bit better."
John discusses the accessibility of buildings and how for him it was more about accessibility from a social/psychological perspective rather that physically due to nature of the disabilities and needs of the people he worked with. The focus was on creating welcoming nonclinical environment. Discusses transport issues and assisting people to apply for bus passes and collecting people if required but the focus being on teaching self-travel skills.
John discusses changes in the way people with disabilities are now supported:
"I think the changes that we made I the 90's and the early noughties were developmentally appropriate, so I think that the changes we made by increasing the available resources in the community and increasing accessibility, and deliberately trying to integrate with Community Education, with Adult Basic Education, with West Lothian College, those things were very important and those things were good benefits and helped people with disabilities."
"Since about 2008/9 since the public services have been disinvested in I think that there's been a restricted access and people with disabilities are now getting less access to services. Specifically the advent of self-directed support, where clients are assessed as having a particular level of need and they're given a budget to buy that service from the third sector, that's restricted peoples access to open services. And now that the council have introduced a charging policy for that, I think that further adds to the difficulties people with disabilities have when accessing services that can meet their need, there's a financial obstacle and there's less service(s) available, that's free. And one of the things I think that's incredibly important is that people have choice and the freedom to make those choices, and that's not tied up with a financial assessment made by a professional person, that it is actually the freedom of the individual who makes those choices. Contracting, I think, has a negative impact, it defines a person by their disability rather than giving people the choice to support their recovery in their way."
John discusses Self Directed Support:
"The consequence of the capitalisation and the application of free market forces within the service, to try to commodify services for people who are disabled, I feel is fundamentally wrong and goes against the concept of self-determination, recovery. I think that services should be free, I think that people should be able to access things, and we need to invest. These are choices that as a society we are making and I think that we've bought into a capitalist agenda around, you have to pay for everything, I think local authorities, health authorities, should be delivering, for free, services for disabled people."
John discusses the "lottery" of Self Directed Support and how he feels people have less now than in 90's:
Is asked about and discussed changes to disability legislation, and talked about the impact of the Community Care Act in getting people into their own homes and the negative impact of services becoming a commodity.
"What I've witnessed since the 90's is a systematic erosion of standards, not a systematic increasing of standards. I don't see people having the choices that we'd like them to have, and this commodification of processes has actually driven both standard and cost down, so I don't feel that that's progress that is, I don't feel that's what they intended to do, I think it's made massive problems in the NHS and local authorities, I have no problem with the third sector, I have no problem with them existing and providing care, I think a lot of their creativity has been really useful and helpful but the contract structure stops their creativity, it doesn't facilitate it."
John discusses competitiveness driving down unit costs and staff wages, and how people working in the sector are earning less money now than in the 90's:
"When you don't pay staff a decent wage, they don't stay in that job for very long ……so you lack that continuity of contact and I feel that my service users, the people who use our services are losing out because they don't have appropriate skilled people and they don't have that consistency and I think consistency is very important for working with people with mental health problems."
I asked John about being politically active or participating in any local, national or online disability related campaigns. He explains he hasn't but has been supportive of them, for example the "See me" campaign.
Is asked John if he feels part of the wider community today:
He feels he is as he's been working in West Lothian community mental health since 1988 and his behaviours have dedicated his commitment to service users and services. He has shared local community disappointments in closures of local services and assisted in securing funding for "The Brock" "And I'm still here."
John is asked what changes he would like to see in his local community:
"There is change already, I can see more people are more tolerant of diversity and people understanding that mental illness isn't something that they should be scared off, and it's something that can effect anybody."
John discusses being pleased with local projects like "The Brock" being in local community centres and a desire to see more acceptance of disability in a general way, not just empathy, true acceptance.
John discusses accessibility of local community at present and that he feels it's the presence of local projects like "The Brock" being in local communities that encourage accessibility, and a desire to extend this into other areas of West Lothian, namely Bathgate.
Is asked about concerns over the future on a national level, regarding NHS, Brexit, Scottish Independence, etc:
John discusses personal concern that Brexit will bring further cuts and restrictions in the public sector.
"My personal view is, watching rich people get richer and the rest of us getting poorer, and the most vulnerable in our society are being blamed for the problems, and I think that's appalling."
John discusses personal opinions on Politics, Scottish Independence, Brexit, Austerity and The Brock.
What leadership or community involvement has been the most fulfilling to you?
John discusses setting up Bathgate House and the requirements for setting up other projects.
Is asked what the impact of being a carer has had on his life, social life and relationships.
John is happy with his salary and discusses complaints regarding NHS issues.
John feels work has in the main been positive and he feels positive about that. He has witnessed real successes of people who have used services he's provided. This makes him feel good. Acknowledging not everyone has a success story, and that it is heart-breaking to see people damaging themselves, feeling helpless.
I asked John about his hopes for the future:
John hopes for an improved economy, and that the economy will start to change and improve leading to better opportunities for people.
Interviewer thanks John and ends the interview.
"I wish I had different opportunities, you know, with learning more like science and that sort of thing. I felt like I'd like to have progressed more. I wish I'd had more opportunities to try things out, to see how I got on but I always think the teachers and education thought, because of my disability, there was only so much I could do."
Scott is a 46yr old man who lives in West Lothian and has Spina Bifida and Hydrocephalus, which affects his mobility and he has slight learning difficulties. He attended a mainstream and a specialist school. After leaving school Scott went to Telford college, and attended a YTS programme. He also regularly attended a day centre until gaining employment in 2002. He is currently employed, and works for a social work department doing admin.
Scott begins by explaining the nature of his disability which is Spina Bifida and hydrocephalus and he has had this since birth.
He explains that he requires crutches for walking and has 'slight learning difficulties'.
The interviewer asks about Scott's childhood and he talks briefly about living with his parents and brother and asks if the house he grew up in was accessible.
"No, it was just an ordinary house with stairs, and steps going into the front and back doors."
He explains it wasn't difficult, and he managed okay at that time.
He mentions having a bike as a child and going on family holidays in Scotland.
The conversation moves on to talk about Scott's school days.
"It was difficult, especially at school, because the mainstream school I had, wasn't adapted, it was just an ordinary mainstream school and sometimes I wasn't allowed out to play in case I got knocked over. As a child there was a lot of people at the school, so sometimes I would have to have somebody with me during breaktime and help going to the toilet and at lunchtime as well. Later on, the last place we lived was Polmont, where I went to my first mainstream school, the second place we moved to was Linlithgow and there was a school in Edinburgh I used to go to called Graysmill which was all on one level and it was for disabled people, which was a lot better for me, getting around, I had a lot more freedom moving about."
Scott is asked about childhood friends, where he talks about having some friendships but also being picked on.
"I had friends but I didn't have the same type of friendships when I was growing up, I did get picked on, you know, as a child especially when I was at the mainstream school, the first one I went to, a lot of verbal bullying went on and so, it was kind of hard to mix with people."
Scott tells us he had no other friends with disabilities at the mainstream school. The conversation returns to Scott's time at mainstream school.
"I had a helper to support me… as a child, I didn't really fully understand what I was going through… things were different back then… back in the eighties… they didn't have the same sort of understanding I suppose, of disabled people, the same rights, I suppose, for disabled people, and… it was difficult you know."
While Scott attended mainstream school, he knew of only one other pupil who had a disability there. He goes on to talk about some of the verbal abuse he received from other pupils.
"Verbal bullying, you know, being called names and, cause of things, names like 'spastic' that sort of thing and, you know, just picked on a lot and… I can't remember what the actual words were but I do remember getting picked on quite a bit."
Scott reflects on his time in special needs education at Graysmill school in Edinburgh.
Around the age of 12, his family had moved to a new house and his parents were concerned that his new mainstream school had too many stairs and felt it would be safer for him to be in special needs education.
"I could've gone to a high school in Falkirk but they felt that there would be a lot of people going about and there was a lot of stairs going up and down and people coming up and down I might have got knocked over, they felt it wasn't safe for me."
Scott did not have much choice in this but felt this school suited his needs as he had more freedom to move about there. Although Scott enjoyed his time there, he would have liked to have progressed more, and had more opportunities to learn, as he never got to sit exams while there.
"This school in Edinburgh, Graysmill, came up, and I thought it was ideal for me but maybe I should have spoken up more, for what I wanted. However I felt the school was okay for me… I got a lot more freedom moving about."
"I wish I had different opportunities, you know, with learning more like science and that sort of thing and maybe a bit of geography and, I felt like I'd like to have progressed more, I never got exams when I was at school, again, that wasn't my decision. I wish I'd had more opportunities to try things out, to see how I got on but I always think the teachers and education thought, because of my disability, there was only so much I could do, sort of thing."
He goes on to talk about making some friends at this school but also getting picked on sometimes too.
"I made a few yeah, I still got picked on for some reason, a wee bit but I did make friends with some people."
The conversation moves on to discuss Scott's teenage life where he mentions attending youth clubs in Linlithgow and riding his bike.
"I went to a youth club in Linlithgow, I enjoyed… I rode on my bike quite a bit. I had a BMX type bike to start of with and then I moved onto a mountain bike… and I just sort of rode about, riding that but again I felt I wasn't, didn't make the same sort of friends as an ordinary, as an able bodied person did, I didn't mind it so much then, you know. It was my disability and the way I was, maybe I grew up accepting the way I was… but as you get older things are different, you know, when I was leaving school I joined a FABB club (Facilitating Access Breaking Barriers) in Grangemouth, which I 've been to ever since, I'm still at it in Grangemouth."
Scott talks about the FABB club and the history of their name. He explains that he feels things are different now for the better. Scott briefly mentions that he enjoyed listening to music and reading about cars in his teenage years. The discussion returns to school days and school outings. Scott tells us he didn't have any favourite teachers. Scott talks about a primary school trip to Lake Windermere where he took part in many activities.
"We did sort of, orienteering and sailing, that sort of thing that was… in the early 80's, again I had to, there was things I couldn't manage, my mum actually came with me, you know, because, just to keep an eye on me."
He also talks about a secondary school trip to Butlins. Scott then talks about leaving school and entering into further education at Stevenson College in Edinburgh where he did a course in 1990 called a CONVEX course and then later a Scotvec module -which was about skills development.
"As soon as I left school in 1990 I went to Stevenson College in Edinburgh and joined a course called CONVEX, it was all about skills development, and I never really found it of help to me in later life, when I left the course I had a SCOTVEC (Scottish Vocational Educational Council) module which was, you know, all to do with your life skills, learning what you learnt, but it was just a bit of paper really, it was never gonna give me job opportunities at the end, it was just about living, you know, sort of, how you live outside of school or college sort of thing."
He never really found this of help in later life and felt because he had a disability this was the only thing they could offer him. He also did a YTS (Youth Training Scheme) in 1991 – which was basic work experience in an office – he again didn't find this of use and wasn't able to continue in the office as it was causing his skin problems to flare up.
"I did a YTS course in 1991/92, where I did, office work but it was very basic."
Scott talked about always wanting to work with cars but he knew this would never be an option as he never had the qualifications.
"That's really what I wanted to do when I was growing up, something with cars but it never turned out well, and then after the YTS course – things just basically stopped for me."
The conversation moves to Scott's early adult life and his experiences at his local jobcentre.
"I went to the job centre quite a lot, when I was growing up into my early adult life, em, we had the DEA officer – which was the Disability Employment Advice for the job centre. I wanted to do driving work, I was interested in driving because I had a car, still have a car, and that's what I felt I was good at and I knew that, you know, walking with sticks… I was going to be limited to what I could do but I was looking for work, doing sort of light work, you know, maybe a courier, that sort of work… and the disability employment advisor, at the job centre, he would always sort of, try and look for work for me to do but he never came back with anything, he was just useless basically, I never got anywhere with him. I actually found growing up in life I was getting quite depressed by the whole thing… because I wasn't really doing anything, once I'd left school, that was it… things were drying up for me and I wasn't getting the same opportunities that I wanted".
Scott is asked if he ever found employment.
"Yes in 2002, before that I used to go to a day centre in Winchburgh. The day centre was never meant to be a long term thing… although, I was there from, like, maybe 93 on right up till 2002. When the small day centres closed and places like the Ability Centre opened I moved from the day centre in Winchburgh to a small community centre in Uphall. I would always have meetings with my support worker about what I wanted to do in life, how I was progressing, in the day centre, and they were always trying to help me get the work that I needed, and I still wanted to do driving work, so they were looking round places like forklift truck driving. I thought well maybe I could get a truck that was adapted for me but they didn't, I went to a training assessment for that and it turns out they felt that I didn't have the same abilities to sort of move around, because you needed a lot of movement… turning your head right round… for safety reasons, and they felt that wasn't really for me."
He received support there to find employment and in 2002, Scott found work in a mailroom in one of the new partnership buildings.
"There was a job opportunity coming up working in the mail room and that came up for me, I saw the building and thought yeah, this will be alright for me… so it was agreed that I would have this role working in the mailroom on my own, so the Ability Centre came to an end so I was willing to give it a go. It was okay to start of with but I felt that although people were coming in and out, I was on my own and I was actually getting quite frustrated staring at four walls. I was always raising things with my supervisors, like how I could progress, but nothing really happened, I stuck with it anyway, it was money coming in, and I wanted to be out in the community, feel like I was doing something."
In 2012, Scott discovered he had cancer, which resulted in him having to take a year out. Following his treatment, he returned to work but as cuts were being made, his role was being cut back. The council did, however, support Scott to find another job doing admin work for a Social Work Department – which continues to go well.
The interviewer asks if the workplace made adjustments in respect of his disability, to which Scott explains that he didn't need any made in his previous employment except for an automatic door being put in. He went on to say more recently, in his current employment, he had an assessment done on his workstation which led to him getting a more suitable chair at his desk as he had a couple of falls due to his old chair. He also had an assessment done last year to look at any concerns on accessing the building where he now works at the Social Work department, however, Scott felt that the assessor was not interested in his issues and nothing was done to make access easier for him. The conversation moves on to talk about the local area he lives in and what it was like in the past. Scott explains that he has lived in Linlithgow for over 30 years and that it is an old town with many shops and buildings, however many of these are listed buildings which cause problems with access.
"Because it's an old town… there are buildings… most of the buildings and shops are accessible but there are… old type buildings that are shops, that are… not able to be adapted for the disabled, because… they're listed buildings."
Scott talks about never using public transport there as he had a car or used a taxi. He felt that his car gave him the freedom to get out and about and he did also use trains, which he felt caused him no problems. He talks a little about using his local hospital in his youth and having to undergo several operations on his legs, with his last operation taking place in 1985. He felt the hospital was accessible for him despite his disability. Whilst the operations didn't make a lot of difference in his abilities, as hoped, they did stop things from getting worse.
Scott goes on to talk about growing up in his community and having a disability. He feels there are improvements nowadays such as being able to access shops. And assessments in the workplace to make things easier for disabled employees, but improvements still need to be made particularly with accessible toilets and access to smaller shops and cafes which can still be difficult. He feels there is still ignorance with regards to people understanding the needs of those with a disability.
"People's ignorance to listening to what your needs are, I find that quite difficult."
Scott says he doesn't feel isolated in his community, but access could still be much better.
The interviewer asks Scott if he is aware of any disability legislation, to which he states that he is because he is employed by West Lothian Council, who he feels 'are seen to be active' in making sure adjustments have been made in the workplace for him due to his disability. He feels he is not as aware of what's going on with current legislation.
Scott is asked if he has been involved in any campaigns to do with disability to which he states that he hasn't. The final question asks Scott if there is anything, he would like to talk about which hasn't already been covered.
"Growing up I feel like I have suffered some sort of depression, you know since leaving school because things have been quite frustrating in getting work, and opportunities and… I've found that quite difficult. I have seen a lot of counsellors in the past."
Over the years, Scott saw many counsellors but they were unable to help him in the way he hoped they would, but he is currently involved with a disability counsellor who he finds is helping him and he now has a lot more confidence in his life and can speak more freely, so things are much better. Reflecting now he thinks as a child he was aware of how difficult it was growing up with a disability and that society didn't listen to him then as it does now.
"When I was growing up, after leaving school… it was maybe down to my disability… I was more aware, of growing up then, about how difficult things are for a disabled person."
Scott is asked if he felt people didn't listen to him due to his disability, and he said yes.
He is then asked if people listen to him now?
"I still feel… parking, people are more aware of… disabled people's needs in that area… but you still get people that abuse it… and what disabled people's needs are… listening to disabled people… in life generally you know, still, I still feel that they don't understand how difficult it is… for disabled people moving around. Sometimes I think the way… you walk about the streets and you feel like people are not aware of how difficult it is… manoeuvring about… and people just walk into you sort of thing… I sometimes feel that people expect you to move out the way all of the time. And I find that frustrating…."
Scott is thanked for his time and the interview ends.
"I really enjoyed my work at that time, there was quite a lot of developments on the go, there was opportunities to do things. It wasn't really like work for me, I just totally enjoyed the kind of spirit of what we were trying to do."
Kathy is 61yrs old and was born in Haddington, East Lothian and now lives in Bathgate. She has previously worked at Bangour Village Hospital and Bathgate House and is currently a mental health advocate.
Kathy shares her work history from 1980s, when she moved to West Lothian in 1986, she started work with a community organisation called Albus and Adult Basic Education. She then took up a post at Bangour Village Hospital in the OT department and moved from there into Bathgate House, which was a new day centre being developed at that time. She worked there for 9yrs and began working in James Young High School as a community worker, and then moved into mental health advocacy, where she still works today.
Kathy is asked about the people she provided care for:
She tells us she has always worked with adults apart from when she worked at James Young High school.
Kathy is asked about working practices at that time:
"I really enjoyed my work at that time, there was quite a lot of developments on the go, there was opportunities to do things, I think because, especially, I think when I was in Bathgate House, that was the period when the community care act came into play so people were moving out of the hospital and into the community and…….one of my focuses was getting groups and activities set up in the community so that people moving from the hospital, could be kind of integrated into the community and have a good social life and also, a sort of feeling of support in the community."
Kathy is asked if the work was person centred:
"Yes I do because a lot of the work we did, back in those days, we spoke to the…service users and asked them what their interests were, and then we tried to provide group work that would match their interests. We also kind of worked in a holistic way, so we tried to help people not just with activities, but also their mental health, with their benefits, with their tenancies, we tried to help people with everything, so it was quite person centred, and it was quite a holistic service."
Kathy is asked how her work made her feel:
"I thoroughly enjoyed it…..we had great times, good laughs, we developed lots of different things, we got up to all sorts of things. It wasn't really like work for me, I just totally enjoyed the kind of spirit of what we were trying to do."
Kathy is asked if she felt valued:
"We got very good feedback from services, and we also got good feedback from NHS Services, because a lot of the work we were doing had a preventative focus, to try and help people stay out of hospital and live in their own homes…..so we got great feedback about the work we were doing. Not just from the service users but also from services."
Kathy is asked about developing friendships with the people she cared for:
"I did develop a lot of friendships and now I'm in the job I'm in, which is fairly linked, in a way, to the job that I did then, I'm still in touch with an awful lot of people that came along to Bathgate House back in those days….so I have had friendships with people, since the early 1990's, and I'm still in touch with a lot of them today."
Kathy is asked if she's still in contact with anyone she used to provide care to:
"Yeah, I guess there's quite a few people that come along to the service user's forum, and I used to work with them when I was employed in Bathgate house, so a lot of the people are still in contact with me."
Kathy is asked about the types of activities people she worked with did:
She shares the various activities, mostly group work, social groups with activities including horse riding, newsletter groups, sports, art groups and summer outings in a bus. Helping people to get out and about to enjoy life.
Kathy is asked about community involvement of the people she worked with:
"We used the local sports centre in Bathgate, we used the swimming pool in Broxburn. We used lots of different community facilities, the community centres as well. So we did quite a few things in the community, we also supported people in their own homes, so we would visit people at home if, maybe, they hadn't been able to come into Bathgate house, we would go and see them and make sure they were alright. So yeah, we did, we'd go through to the Edinburgh Festival, so there was quite a lot of….there was quite a good community spirit around at the time"
Kathy is asked about accessibility of the buildings she worked in:
She tells us that in the beginning Bathgate house wasn't wheelchair accessible but that changed quite quickly and became accessible downstairs but that took a while to put into place.
Kathy is asked about transport:
She explains that most people used buses and that they would be provided transport if needed to access the day centre.
Kathy is asked about changes to the way people are now supported:
She feels there has been a lot of change. Housing has changed, shared housing was more common in the past.
Kathy is asked what the biggest difference is:
She feels it is now more difficult for people to get together and access mental health specific groups, so there is a greater risk for social isolation.
Kathy is asked about disability related legislation:
She talks about the Mental Health Act (2003) which started in practice in 2005. "The impact that had on my job now is that advocacy became a legal right for people with a mental health problem, so that made quite a difference to people and for us. Several changes to disability benefits, have had quite an impact, not just on our organisation but on people themselves. Changing from Disability Living Allowance, to Personal Independence Payments, changing to self-directed support, so there's quite a lot of changes in legislation that have impacted on our organisation and on our clients."
Kathy is asked if she's ever been politically active:
She explains that she facilitates collective advocacy, and that it is not about what she thinks but rather about the people attending the groups.
Kathy is asked about any disability related campaigns she has been involved with:
She tells us about Experience panels, and campaigns about Personal Independence Payments. They also link in with other organisations that are campaign groups, like the Poverty Alliance, through their collective advocacy.
Kathy is asked about local disability related campaigns:
Kathy tells us about their current campaign regarding the contribution policy at West Lothian Council.
Kathy is asked if she feels part of the wider community today:
She does, but she doesn't feel the people she works with do.
Kathy is asked about what she thinks could make her local community more accessible:
She feels that there are too many automated systems and locked doors.
Kathy is asked about issues on a national level:
She shares her views about NHS lack of resources, less beds, longer waiting lists. Welfare is a concern, food banks becoming part of daily life. Regarding Scottish Independence and Brexit, she shares her experience of having campaigners from Yes and No come and speak to service users, allowing them to make their own decisions.
Kathy is asked about what leadership/community involvement she has felt, has been the most fulfilling:
She feels most of her career has been in mental health, and that helping people to speak up is the most fulfilling thing to her. And that helping to uphold people's rights and giving a voice to people who struggle has been the most fulfilling to her.
Kathy is asked what impact being a carer has had on her life:
She tells us that she has had the opportunity to do different jobs and that getting to where she is today has given her the opportunity to develop friendships and feel part of the community, even though she wasn't originally a local person.
Kathy is asked what she's learned about herself and her hopes for the future:
She feels quite a lot, she's quite good at organising things, but she's a very disorganised person. She's learned a huge amount by listening and learning about other people. Her hopes for the future are that she loves her job but her next hope is to retire, at some point in the not-too-distant future.
Interview ends with thanks!
"The Disability Discrimination Act was a big thing. They tried to give disabled people equal rights but it was watered down. Businesses thought that making everything fully accessible would cost billions. So what they did was come up with an Act that didn't go as far as it should have."
Gordon was born in Bangour General Hospital, Broxburn in 1965 and is 53 he now lives in Carmondean Livingston.
"I was born with Cerebral Palsy or CP. My CP affects all my limbs; I have difficulty in walking; I have a speech impairment; I have difficulty in holding things and my balance is poor."
"I'm the youngest of three sons and I lived with my Mum and Dad and my two brothers. I was born and raised in Broxburn. I had a normal childhood. My oldest brother emigrated to Australia when I was five. So it was me and my other brother and my Mum and Dad.
The house was made partly accessible by a handrail. We had stairs up to the three bedrooms, but I was slightly more mobile at that time and I was able to go up and down steps. I needed both railings at that point."
"It wasn't until the age of ten, that we had proper holidays. Before that when my Dad got his summer holidays, we done a day here and there with the car. From about ten we went holidays to Butlins and Blackpool and places in the UK. I enjoyed Butlins. We went for a week with my Mum and Dad. My other brother was in his late teens and didn't want to go on holiday with his parents. We had fun and games. A holiday camp a bit better than 'Hi-de- Hi' I would say. During the holiday we did things around the campsite, entertainment for families."
"I had friends but not really in Broxburn, because most of my friends in Broxburn didn't have a disability. Most of my disabled friends were at school in Edinburgh."
"From what I can remember I went to a mainstream nursery and started at the local Kirkhill Primary. I was there for about 4/5 months. As there were too many steps, it was agreed that I would go to a specialist school. It was Westerlea, a school for kids with Cerebral Palsy."
"The school was all accessible. It was a school for people like myself, but most were more disabled than myself. I would say I was one of the more able kids at school."
"I liked free-time and sports. I got introduced to wheel-chair dancing. Probably the reason why I like wheel-chair dancing was that you got off class to practise. It was like a team of 6 or maybe 8 of us. We went into competitions. So we became Scottish champions for our age range. Then we became British Champions. I enjoyed that. I remember going to Perth, Edinburgh and Glasgow for competitions. I went down to London and York. It was like three boys and three girls. Like Scottish Country Dancing e.g. 'Strip the Willow', but doing it in wheel-chairs. We wore smart shirts and trousers and as one of the team was a McLeod, we wore a sash with the McLeod tartan."
"After school activities - I went to a youth club for disabled and able-bodied kids called Broxburn FAB Club. That was where I met most of my good pals whom I'm still friendly with. My early childhood was fairly good. I met a lot of friends, but I also met kids who didn't like me because I was disabled. Sometimes I got bullied. But I think a lot of kids at that age get bullied. Because I appeared different."
"I was brought up just like my other two brothers and my family never really made much adjustments. Just a couple of wee things. To me, I didn't really think I was disabled. Other people around me, made me disabled. I went out and played football, played sports with my friends. Okay, I was a bit slower. I adapted to things. I tried lots of things. If I could do it once, I would do it again, if I couldn't do it, I wouldn't do it. The only think I couldn't do was climb. I couldn't climb trees or jump fences or anything like that. I did quite a lot of swimming at school and ended up swimming in local swimming galas. I won medals, swam for Scotland when I was a kid."
"Normally if you went to Westerlea, you went from age five to sixteen, but in the late seventies, some kids went to another specialist school called Graysmill. It was more like a mainstream school, but was still a specialist school. It was felt that it would be more beneficial if I went to that school, which I was happy to. I did that. The only problem was, I didn't go till I was 13/14 and they decided to put me back a year. So instead of going into third year, I went into second year. It was okay, because it was a better education. Education was good, but you were limited in what you got taught at that point, I didn't have much option, but to agree. Nowadays, I believe that kids have a better say in what they can and can't do. When I was a kid, you just did what you were told."
"Most of the teachers were okay. I felt that the teachers in Westerlea were more mollycoddling. They focussed more on what you couldn't do, rather than what you could do. In some ways that was good, because it taught you the maximum you could do with a physical disability. They taught you how to walk properly. I got 'physio' at both schools. A lot of kids tend to go to mainstream nowadays and I think they miss out on that. Because I don't think mainstream schools have a 'physio' at the school. Whereas at our school they always built in time if you needed a physio."
"I would say may favourite subject was Maths and my least favourite was English, because I have difficulty reading and writing. I got extra help, but I think they thought I was just a bit slow. But in hindsight, I think that part of the brain was damaged at birth. With Cerebral Palsy, it's the lack of oxygen to the brain, tends to be a motor that affects your mobility, but sometimes it can affect other parts of the brain as well. So I think possibly my spelling and reading were affected by it."
"I think the teachers at that time just had basic training on how to approach this. They were giving me 'Jack and Jill' books. It just got frustrating. Even nowadays, I can speak better than I can write. Your talking about the late seventies/early eighties. It wasn't until the nineties that they thought people might have difficulty reading and writing, not because they're stupid, but because of other reasons."
"Because we had special schooling, all our buses were adapted, but if I went on an outing with my Mum or on public transport, there was always issues getting on or off busses. There was always a problem, even though I can climb steps, they always seemed to be high. I don't think bus drivers back then really understood the needs of disabled folk."
"I went to school camp, I remember it, for all the wrong reasons. It was at Dalguise. There was a group of disabled and non-disabled folk, which was fine. It was okay during the day, but at night we tended to get bullied and some of us were picked upon. You just thought it was a part of life back then."
"I was hoping to stay on at school, but the school said, 'it's no for you son'."
"There was a new course at Stevenson College called a Bridging Course. It was bridging between leaving a special school to go into normal working conditions. Part of it was educational and part of it was experiential, e.g. how to do budgets and things like that; but I managed to get some 'O' grades. They said just stay on for a second year. I managed to get 'O' Grade Maths and English, that I didn't get at school. I wasn't in the dunce's class. After I did that, I went to Bathgate Technical College and did a part-time business course. It was meant to run for a year, but because there was only six of us, after three months they cancelled the course. I had figured I might get into something to do with finance or something like that after the business course. Something to do with book-keeping, stuff like that."
"After that, I went on the, 'Dole' and there was a, 'Disable Officer' at the, 'Dole' office. I did temporary work for three or four years, but nothing came off it. I had a few advisors, one was okay, but they were in the post, but didn't really want to be in the post. If you did some work, you got extra benefits, 'dole money'. One job was working on a building site, looking after the tools. It was alright, that was when I was more able."
"After that I started to do voluntary work in Bathgate. I went along one day a week to help Disability West Lothian, (whom I'm still involved with) to put together a newsletter. Over the years, I got more involved in the organisation and became involved on the committee; then I ended up being a member of the board, which I'm the Chair of nowadays. There were no adaptions made for the workplace when I was working. I got extra time to do the work. It was a hit or a miss. Some people in the workplace took me for who I am. Others said, 'Oh what is he doing here, he's a waste of space'. It would have been better if they had picked a more suitable job. Putting a disabled person on a building site is not that great. I was handing out the tools at the start of the day and putting them back at the end. The rest of the time I just sat in the hut listening to the radio."
"It's different now for disabled people in work. They tend to focus on their abilities and tend to listen to them."
"I would say now there is more opportunity, but less work. People assume those that are disabled will work in offices or with computers, but a lot of disabled people don't like doing that. Maybe some disabled people want to work with kids and things like that."
"I was brought up in Kirkhill, Broxburn, which was flats, but we were not too far from the Community Centre in Cardross. When I was young, I used to get off the mini-bus, went in to get something to eat and played outdoors. Maybe twice a week I went to the Community Centre, Youth Club, Fab Club, disco. I think young people back then had less opportunity, but they seemed to do more. I maybe went out to play football, because I lived 'round the corner from the Academy and we used to go to the Academy playing fields to play. During the summer, you might have played tennis or golf – hitting the ball in the football field and things like that."
"I love music and when I was in my teens, I used to go to a record shop every week to buy 3 or 4 songs/albums with my pocket money. I would go home and play them and me and my friends used to meet up in our parents' homes to listen to music and talk about it. Probably the biggest band I got into was the Police. I like Sting; David Bowie as well; Simple Minds. But before that I had an older brother and was brought up with his music, like 'Deep Purple' and things like that. My Dad liked music as well, so there was always music getting played in the house."
"Because I was more mobile when I was a teenager, if I had been in a wheelchair, I probably would have found it more frustrating as places wouldn't have been very accessible. If you go down Broxburn Main Street nowadays most of the shops are the same with a step into it. Or if you can get into the shop there's not much room. The pubs – not one of them has an accessible toilet, if you are in a wheelchair. You may be able to get a pint at the bar, but if you need the toilet you can't go."
"Busses – it was all steps, quite high steps. For some reason, busses always seemed busy and it was always a nightmare trying to get a seat on busses. The majority of the community I think, respected people with disabilities. They might not have understood what your disability was, or what your needs were. But I think they, the community I was brought up with, the majority, took me for who I was. Even nowadays when I go back to Broxburn people say, 'oh Gordon, how are you doing?' I'm well known in my old community."
"Because I was a member of the FAB club I met other disabled people in the community, so I knew them. There were some other elderly people in the community that I was aware of. But because I was brought up with, 'disability wasn't something special', if I saw someone with a disability, I just said, 'hello' as if it wasn't a special situation."
"Most of the time I felt included, most of the kids tried to involve me as much as possible. When I meet people of my age from my community its, 'oh hi Gordon, you're the young boy that had a tricycle'. 'Yep, yep.' 'You're the guy that used to give me backies on your tricycle'. Or other things, like when we played in the street, there was a game called kerby where you got a ball and stood on one side of the road and somebody stood on the other side and you chucked the ball hitting it off the kerb. We also played games like kick the can and I was involved in that. The only thing I couldn't do was skipping and some other games. I had a large tricycle which I got a loan off from the NHS. From about the age of 6, I had two or three tricycles for about 10 years. Me and my friends used to go away on bikes in the summer."
"There were two main institutions in the Broxburn area, they were mainly for people with learning disabilities. Bangour Village and also Gogarburn, which was near Ingliston."
"What I liked best about Broxburn was that everyone knew each other, so if I was ever in difficulties, there was always someone. They would say 'you're Gordon, do you want me to take you to your Mum and Dad? Or take you home.' I probably wanted the opposite. Everybody knew you, which was a good thing. But also it could be a bad thing as some people were small minded. You've got a disability; you don't talk properly and they'd tended to think you were stupid and not the same as them. They didn't understand and put you in the one category."
"I remember 'the Year of the Disabled', that was 1981. That was the first time disability was focussed on TV and the media."
"Legislation - it probably wasn't until the mid-nineties that there was legislation, which was, 'The Disability Discrimination Act'. It was a big thing. They tried to give disabled people equal rights but it was watered down. Back in the nineties it looks like they realised that disabled communities could have their say on life in general, but businesses thought that to make everything fully accessible it would cost billions and trillions. So what they did was come up with an Act that didn't go as far as it should have."
"Several things affected me; buildings became more accessible; transport became more accessible. It didn't happen overnight, but you could see a difference, because of legistlation public bodies had to involve disabled people in their policies and make sure things were better."
"I have been involved in local and also national campaigns. I was involved in the Scottish Disability Equality Forum; I've been in a lot of campaigns; I was the Chair-person at one point. I was also involved in the local Labour Group for a wee while, but I got fed-up with that. Now I just focus on disabled people in the local community. The Scottish Disability Equality Forum works with the Scottish Government to improve the lives of disabled folk and have had various campaigns. I would say they were successful, but as usual, what they say they will do and what they actually do. When politicians say they will do something they may only do 50% of that. However at the time, we felt it was successful."
"I'm not involved in the wider community as much as I used to be. I feel maybe a bit isolated. I know I want to do something, but I don't know what to do with my life. The campaigns now and the campaigns that were there in the eighties, it feels like, well let's do that, but we've done that before."
"What I think is in the last five years it has become more challenging for disabled communities who have taken a hit, because of lack of money for them, that able-bodied are spending. They are having to prove why they still need that facility or money. It's just disheartening."
"The fact that Councils are having to save money and in West Lothian they have taken away the Taxicab scheme; we have an alarm system in the house for health and safety and prior to last year, we didn't pay for it. Now there is a yearly charge. Some of the services have been taken away. I fully understand that there has to be cuts, but they seem to be aimed at the disabled and elderly, an easy cut. I feel disappointed and frustrated and find myself asking what's the point."
"I would just like disabled people to be given a better chance to participate in their community and not find vital services being cut. What disabled people see as vital, other people may not."
"How to make the community more accessible, well Livingston is quite good. The main issue we've got in Livingston is they've got two train stations and none of them are staffed which for a town the size of Livingston is not good. If I want to go on a train and take my wheelchair, I need to phone to book assistance. If it was a properly staffed train station, you could just go up and they would assist. The bus service is okay. Some of the pathways in this area could be improved; the lighting could be improved."
"Also I think Community Education is important, there should be more services to involve the disabled. I'm a part-time Youth Worker, so I can see the cuts. It's shocking. All the money is going to Education, very little is going to Community Education. They've stopped all the youth clubs. All the money is being focussed on projects. Not all young people or adults needs to be involved in special projects. There should be more community involvement. Social involvement is a problem as lots of young people don't know how to talk to each other. All they seem to do is play games, without talking to each other. If you get them into a room and sit them down and chat; we used to have discos and played pool and football competitions. Some areas might still do that, but not this area."
"The NHS is not fit for purpose. There is never enough money put into it. They need to realise how the NHS can work for society today, because it is still based on ideas from the 40s/50s. Everybody should have equal rights, but they keep cutting services and you have waiting lists. I just think that's sad."
"The benefits situation frightens me. You've got to keep on proving that you're disabled. Every two or three years you have to fill in an application or get invited for assessment. I was born with a disability. My disability is not going to change because I'm getting older. I get more aches and pains and get sore, but how is my disability going to improve. Society should look after the elderly and people who need support."
"I'm fascinated by Brexit. I think it was a stupid idea in the first place. I accept the Referendum result, but they should have put a caveat. With almost every other Referendum there is a threshold that says you need say a 60% or 70% majority before it's activated, but not this one, if the majority had been 50.9% to 49.5% then it would still have went through, which is stupid. There is only 4% of a difference, 48% to 52%, and quite a few folk didn't vote. I just find it strange, the way the government in fact all MP's have just made it more difficult than it should have been."
"Independence – would I like to see Independence in Scotland? Yes. Do I think it will happen? No."
"My hopes the future are just to be happy and healthy."
"Whay I find most fulfilling and really enjoyable is doing youth work it keeps me young at heart. Also being involved in local disability groups to try and make the local community better for disabled folk."
"People will sometimes say they feel sorry for me being disabled, but I was born with my disability, so I don't know any different. As far as I'm concerned, I'm just as normal as the next person. I try and lead a normal life; I try and lead a good happy life. I try and do as much stuff as possible."
Interview ends with thanks!
"Practices are much improved, the way we go about things such as confidentiality and respecting people's views is more enlightened. I think we're a lot better at meeting people's needs now than we were perhaps 10 or 15 years ago."
Can you tell me about yourself?
"I was born in 1950 in Drumshoreland Railway Station Broxburn. I live in East Whitburn, West Lothian. I started off working in industry straight from school in 1965 with David A Hall Broxburn. I worked as a production manager up until 1985 then I left and went to Gogarburn Hospital to work, I was there 4yrs. I left there and went to work for the Scottish Association for Mental Health SAMH as a support worker. When Bangour was closing I worked there for a few years. I then worked with people with special needs in Blackburn day centre for West Lothian Council, then back to SAMH for wee while, then St John's Hospital social work department doing discharges for the elderly, and I've been here in Bathgate House for the past 15yrs off and on, I'm semi-retired now."
What ages were the people you supported and provided care for?
"All ages from teenagers to the elderly."
What do you think about working practices at this time?
"Practices are much improved, the way we go about things such as confidentiality and respecting people's views is more enlightened. I think we're a lot better at meeting people's needs now than we were perhaps 10 or 15yrs ago.
I work at Bathgate House for West Lothian Council now and here it is very person-centred, very much so. This made me feel good about myself, being able to help others, made me realise how much help some people needed. So yeah, it's been a good experience for me working in the care sector after working in industry."
Do you feel valued?
"Yeah, I feel valued here at Bathgate House, yeah, I certainly do."
Did you develop any friendships with the people you supported?
"Yeah, friendships a hard thing to describe regarding the people you care for, I suppose but yeah, I've always been a friendly kind of person, I get a friendly response from people put it that way."
Are you still in contact with anyone you used to provide support to?
"No longer, no."
What kind of activities did the people you supported do?
"For the people I worked with in Blackburn day centre, for a number of years, with learning disabilities, we provided loads of activities for them, we did a drama group, outings, social events a lot of it was actually, the bit I worked in, more to do with special needs and was personal care, physiotherapy, stimulation that kind of stuff."
Were the people you supported involved in their local community, out with the setting you provided care for them?
"Yes, depends on what setting I worked in, in the mental health sector where I worked for many years, people were involved in the local community, although still isolated within that community at times. The learning disability field I worked in, a lot of the clients I worked with were in the community but if you like, weren't in the community, as there was very limited access to community things because of their disabilities. But that has improved a lot."
Was the building you worked in accessible?
"Yeah, all the buildings I've worked in have been accessible."
Did the people you support have access to transport?
"Yes, in the learning disability fields a lot of the transport was provided by West Lothian Council, for example, they had buses laid on to bring them to the day centre and also take them home, for those that required it, as a lot of them were in wheelchairs that was quite important, regarding the wider community, most people I work with now have bus passes and one or two have cars, the transport network has much improved."
Do you think there has been changes in the way people with disabilities are now supported?
"Yeah, there have definitely been changes in that over the past few years, there's more awareness, more accessibility to services now than there was before, attitudes have changed as well, there is a more positive outlook I would say for people with disabilities now, and people's views on them."
What do you think the biggest difference is?
"I think education has been a good one and a lot of that has come from the government as well. And people's rights have changed as well obviously, over the years, I suppose a lot of that did come from the European Bill of Human rights. Now that's being acknowledged, I think there's big changes there now, people are now being noticed and their needs are acted upon for instance the special Olympics, all the things that are happening now, wheelchair users have got more access to events, I think there have been big improvements."
Regarding disability specific legislation and events, what do you remember about changes to disability legislation?
"I remember when the community care act came in, we were quite involved in that back in the 80's, and how the changes were going to come about, partnership working, now we're in a position here were the legislation at Bathgate House is pretty good because we do work in partnership with West Lothian Council and the NHS, Lothian Health, so we work in great partnership. So, I think that legislation has worked to a big degree, but I think there is a lot of work to be done in that area because there still is some distance between organisations, I think there's a lot of improvement needed there. I think Bathgate House is a great example of partnership working."
What impact did the legislation have on you?
"It had a big impact on me because when that came out that's when I really wanted to go and work in the community more. With the community care act, I did work with the view of integration of the community for people, and I think we did a lot of good work with that, especially in my days with SAMH, I think that was at the time when we were bringing people out the hospitals into the community, we had houses opening up, people were then having a life outside an institution, if you want to call it that, yeah so that's been good."
Have you ever been politically active, do you participate in any disability campaigns, local, national or online?
"No I've never been what you call politically activated regarding things, I think I give 100% with the places I work in, but I've got a family and I've never been totally, politically motivated."
Do you know of any local disability related campaigns?
"Not off hand."
Do you feel part of the wider community today?
What changes would you like to see in your local community?
"I'd like to see changes in respect to more housing for people with disabilities and integration of people with disabilities into the community more, I still feel there may be a lot of work to do in that area. The problem is with housing, housing shortage, and I sometimes feel that people are misplaced, they're given a house but maybe not in an appropriate place or the appropriate type of house, so I think there's a lot of work to be done there, again I think it's to do with money with the cutbacks from the council, I think there is stuff needing addressed there, regarding housing."
What do you think could be done to make your neighbourhood more accessible?
"To make the neighbourhood more accessible again its to do with housing. And to have the facilities in the community for people, I sometimes feel there isn't enough facilities, if you look at the community centres, they're closed a lot of the time, so I feel that they could be accessed perhaps more. Again that would need a drive from the council to use these facilities. I think the gyms are very good, but again these are very mainstream types of places."
Do you have any concerns about issues on a national level?
"Yeah, I think there are concerns there about the future of the health service, I think, the way that's going, the lack of funds, if you look at stories you hear about for instance the new hospital, the sick kids hospital, some of it having to be demolished, there's loads of issues there about how we go about building things. If you look at a new hospital, that should be fit for purpose when it's built but in that case it's not, yeah, I think there is, if you look at West Lothian Council there's certainly cut backs there as well, so that inhibits access to various things as well through lack of funds there has been massive cut backs there, the day centre, some of the family centres closing down as well. If we look at new ways of working, with children for instance trying to get more involved with education, with schools, people with disabilities in mainstream schooling, I don't think that always works very well, I think that could be a lot better. I think a special school like Pinewood, it's important we keep Pinewood open for people, kids with learning disabilities so they feel valued and looked after."
Regarding you the care worker, reflecting on your life to now, what leadership or community involvement has been the most fulfilling to you and why?
"I think the way I look at the care profession in my lifetime, I think some of my best work was done probably with SAMH in the early years 1991-94 I think that those were good years when we were breaking new ground regarding getting people out of hospital, getting people Disability Living Allowance DLA, people didn't have that before, so we made a lot of inroads into that.
My years in Gogarburn were valuable as well because it was closing, and we were moving people out of there. And then now in West Lothian Council I still feel a valued person. With regards to closing the hospital and getting people integrated into the wider community I think there's more leadership now because early on there was probably some restrictions there regarding people worrying about who they were going to get out of the hospital. So there was a lot of leadership shown by SAMH during that period of time to make people feel more at ease with the hospital closure because people had been in the wards for many many years and therefore people weren't sure about the people coming out the hospital, but it proved that these fears were unwarranted. So I think there was a lot of leadership by SAMH in the early days. Don't know about now right enough but certainly Bathgate House has shown a lot of leadership, in the community, and integration in the community. I think John has been in the forefront of that, so he's been a great model for the community. John's the day services manager so he's been a good role model for people. If we had more people like that it'd be good, again, it's back to that collaboration thing, leadership in the community."
Overall what impact has being a carer had on your life?
"It's had a big impact on my life, being a carer, when I was younger my brother was down syndrome and that gave me an insight into the problems that would arise but that was away back in the 60's when there was no understanding really about what was needed for people with learning disabilities, there was a lot of work to do back then. I've always felt good about coming into this line of work, I've offered a lot to it because of my experience, my personal experience. Now with my professional experience I feel I still have a lot to offer, for although I'm in my later years, I think my golden years might be behind me, but I feel there is still a lot for me to do, I'm in semi-retirement now, but I do mainly group work here at Bathgate House. These are the valuable groups, a good catchment of people who come here to the groups, so therefore we can monitor and see people regularly, regarding their mental health, so it's good."
What are your hopes for the future?
"My hopes for the future is that Bathgate House remains here under the NHS banner, for the time being anyway, and that it develops. I understand that we won't be here forever. I think John will look at the future and have this fit for purpose for the future, for new people, maybe younger people. A lot of our people here are elderly now, so that'd be a change."
Have I missed anything, would you like to add anything?
"No, I think that's really good, the questions you've asked me, I think it's important that these questions are asked, maybe we don't always get enough feedback from people in the caring profession, or carers and families for that matter, so I think this stuff is invaluable. It gives an idea of what people are feeling and what's been going on with the people that are actually employed in that profession. I think it's important that people understand or know a wee bit about our background."
James is thanked for his time and the interview ends.
"One of the biggest changes is, self-directed support, and the way in which people now have more control in the way their service is delivered. Care is now more community based than it was in the past."
Jorden is 36yrs old and was born in Bangour General Hospital, West Lothian and now lives in Whitburn.
He has been working at the West Lothian Council run Ability Centre in Livingston for the last 17 years where he is now the Manager.
Jordan manages centre based and outreach services for adults with a physical disability in West Lothian.
Jordan talks about the training he's received over the years while working there and goes on to discuss the types of services the centre undertakes both inhouse and within the community.
Jordan discusses some of the reasons why people who have a disability may not be involved within their local communities.
Jordan talks about access to transport for the centre's service users including public transport and other transport services including Handicabs. "I think, over the years, it's getting slowly better, but I think there is still probably gaps there for certain accessible vehicles."
Jordan talks about an average day in his role as manager of the centre, concluding that often his days are very varied.
Discussion is given to the issues that he finds most challenging as a manager of day services. He mentions that the changing criteria, defined by the Council to who can access services, as having a big effect.
Jordan talks about current working practices within day services and the need to gain service user feedback on how it may be improved.
Jordan reflects on the question "Do you think the council you work for is person centred?"
Interview moves on to talk about Jordan's working conditions, which he feels are very good and that the council are good employers. He feels well supported by management and colleagues and goes on to discuss the rewards and difficulties experienced when working in the care sector.
Jordan answers the question "Do you feel valued?", and goes on to talk about having friendly but professional relationships with the service users he works with.
Then Jordan talks about the changes over time to the way people with physical disabilities are supported. He comments that one of the biggest changes is, self-directed support, and the way in which people now have more control in the way their service is delivered. He also remarks that care is now more community based than it was in the past.
The interview moves on to look at disability legislation where again, self-directed support, is talked about. He also mentions The Community Care Act.
Then Jordan discusses his thoughts on what could make his community closer and more accessible. He mentions the opening of a new partnership centre in Whitburn.
The conversation turns to national concerns in particular council budgets and their recent cuts.
Then Jordan discusses the impact working in care has had on his own life.
Discussion is given to the contributions to community involvement that Jordan has been involved in. He gives mention to a Brokerage Service that was set up in the workplace to help service users access additional services.
The interview concludes with discussion of the Jordan's hopes for the future.
The interview ends with thanks.
"The shops in Linlithgow were not accessible, because they were old buildings and historic. So if I needed to go to the shops, I could open the door and wait for an assistant to come out to me or helped me in. Everybody knew me in Linlithgow. People were helpful."
Moira Anne – I was born on 25 August 1967 in Bangour Hospital.
"I grew up in Linlithgow and I now live in Livingston."
"I was born with my disability which is Cerebral Palsy. It affects all my four limbs - hands and legs."
"I lived in Linlithgow with my Mum, Dad and brother."
"My home was not assessible. We had stairs up to the bathroom and bedrooms and steps at the front and back door."
"For holidays we tended to go to England – Blackpool and Southport. Not far away. A couple of hours drive. We did the usual things, seaside, beach, swim in the sea, shopping, going to the shows. I swim and swam in the sea."
"I went to a school which was for people with Cerebral Palsy. Then when I got older, I went to a secondary school called Graysmill, in Edinburgh, which was for any disability. I went to Westerlea first, that was for people with Cerebral Palsy in Edinburgh. I got there by taxi or mini-bus. West Lothian Council provided the transport. I had friends at school and I also had friends in my estate. I was lucky as I stayed at home with my parents, but it was a residential school. They watched for the taxi coming and then I got homework done, dinner, wash up and then I went out to play."
Education – early years.
"I went to a mainstream nursery and then my surgeon decided at 4 years that I needed to go to a specialist school. I went to Westerlea, so he could watch my progress and tell me when I needed operations done. So I was in and out of Princess Margaret Rose Hospital to get operations done when I was at school, but I also has education in school, so I didn't miss out. Sometimes if it was a short procedure, I got it done during term time, but if it was long, they waited until the summer holidays. Quite a lot of my peers had similar operations at the same hospital."
"My school was accessible. I walk with sticks and need a wheelchair for long distances and drive a car now. The secondary school, Graysmill was even more accessible. It was built with disabled people in mind. It was opened in 1973 for Spina Bifida children, because they had a boom in that year for Spina Bifida children. But because there was not enough, it was opened up to any disability. There was an increase in the number of people with Spina Bifida in the sixties and seventies. The main disabilities are Cerebral Palsy and Spina Bifida. In the early years, it used to be Polio."
"I used to like playing with dolls and girls' things. When I was wee, I couldn't wear high heeled shoes and my friends could, so I used to put them on my hands and crawl about the floor instead of walking with them. So I was part of the group. I also loved swimming and reading. I went to swimming lessons with my Mum and Dad."
"The other people at school had disabilities, so we just got on with it. I was brought up to be 'you might have a walking disability, but I got treated like everyone else'. I did Brownies, Guides, First Aid, Sunday School and church. They were normal groups and I had a disability, but went with my friends, but the accessibility of the hall was a bit difficult with steps and stairs, stone steps and that. The most difficulty I had was getting there if I didn't have my Dad or my friend's Dad to help me into places. Nobody would take me in to places. So you had to rely on your parents and friend's parents who knew how to help you. I had a very pleasant early childhood."
"As a teenager during the eighties my friends and I sung in the garage as a group like Abba. We dressed up. We did the usual things. My friends wanted to do gymnastics and ice-skating, but I couldn't do it. I missed out slightly and resented it a bit then. But my father did everything he could. When I was younger, I wanted skipping ropes, but I couldn't skip, so I got skipping ropes and my friends took one end and my father jumped through. But that was to make sure I wasn't left out, but he couldn't do that all the time. I did everything with my friends that I could."
"At school we did wheelchair dancing and we did like 'knock out' javelin, club wheelchair sports. We also went to London to Hammersmith Palace, dancing in front of the Queen. I love music and cinema. I like pop music. We've been to 'Party at the Palace' in Linlithgow. I like Deacon Blue and We, Wet, Wet. The facilities at 'Party at the Palace' was a platform for wheelchairs and was on the hill but it was too wee and far away from the stage. So I don't feel part of it. The toilet was on a hill. We went to TRNSMT music festival and you could not get better facilities for disabled if you tried. It was flatter, with a big platform for about 300 wheelchairs and their carers. Plus they came and asked you if you wanted a drink or something to eat and would go for it. The toilets were easy to use."
"Going back to secondary school I was told to go to Graysmill school, because I had to get operations. Linlithgow Academy had stairs, so it was not suitable. The primary school Westerlea was very strict, but Graysmill was like a normal High School. You got more freedom e.g. to go to a local shop at lunchtime. Westerlea was at Ellersly Road, Murrayfield, Edinburgh and Graysmill was at Craiglockhart. These schools and the hospital are now flats and houses. The teachers at school were nice and really helpful. At Graysmill I studied nearly all the subjects, Science and English were my favourites. I hated Maths. After leaving school I went to Stevenson College, Edinburgh to do a bridging course. It was not my choice. Careers told me if I didn't go there, I would end up in New Trinity which was a work placement. I did reasonably well at school. If I had the choice, I would have liked to have worked in a nursery which children. I wanted to be a nurse or air hostess when I was young. But I never got the chance."
"After I left college, I did voluntary work. I started off doing a YTS course and then I went as a volunteer to Disability West Lothian. I have been there nearly 30 years. I do access work. We go out to buildings and churches and help them on access issues. I enjoy that. We've covered most of the Council Buildings and when the Partnership was opened, we were brought in for advice."
"We were based in Bathgate at Hopeton Lane. Downstairs was okay. We raised enough money to get a lift put in to go upstairs. Before that I had to get carried or helped up to the toilet. But we got the lift in eventually. That would be about 1991/92."
"The way people respond to your disability depends on where you go. Sometimes in the Shopping Centre in Livingston people look at you or say, 'people like you shouldn't be in here'."
"Working life hasn't changed over the years for people with disabilities e.g. financially. If I had a house and payed rent, I'd have to work out my finances. If I wanted a job, I would have to start at the top instead of at the bottom. I would need to start at the middle, by the time I paid for rent, food electricity etc. Or near the top salary, to have the life that I had before."
"I think it's harder today because of the benefits system. A lot of people are saying they are living in poverty because of the benefits. Although I am married now, I have had quite a comfortable life. Although I get benefits, I can manage. Sometimes I get annoyed and wish I could do more. The biggest thing is my car, if I didn't get mobility, we wouldn't have the nice car that we have. It helps me get about and that's the best bit about the benefits' system for me."
"I don't think workplaces have adapted well to access, unless it's new buildings. Or if they want a person with a disability in their workforce, then they have to make adjustments. But a lot do not want the added expense."
"Swimming pools were accessible for me because they had a hoist for getting in and out of the pool. Broxburn put in an accessible cubicle and made it bigger. So they did quite a lot. I used swimming pools about once a week or more."
"My Dad worked at BP in Grangemouth, that was the biggest, well BP, ICI. they were the biggest industries. My Dad thought that I would work in the offices, but I didn't want to. I thought my Dad would be keeping an eye on me and I didn't want that."
"The shops in Linlithgow were not accessible, because they were old buildings and historic. So if I needed to go to the shops, I could open the door and wait for an assistant to come out to me or helped me in. Everybody knew me in Linlithgow. People were helpful. I went on the bus a few times, but they didn't have any ramps at that time, so it was quite difficult to get on and off. The busses have changed, they now have ramps and drivers come out, or they press a button and it comes out automatically. Trains are different. Here in Livingston North it's not a manned station so you have to phone four hours before you want to travel in order to get ramp out. So it hasn't really changed on trains. Trams in Edinburgh are super."
"We live in a scheme for disabled people and all the houses are flat and bungalows. We now have quite a few of these houses in the area. I wouldn't say I felt included living in this town. I lived in Linlithgow, just off the main road and you could walk to the shops, which had a High Street. Now in Livingston, you have to take the car. We are quite lucky we have Carmondean Centre with Morrisons etc, but it's not like going down to a Main Street. If you want to go to Livingston Centre, you have to take a bus or the car and park. If I could move this house to Linlithgow, I would or Broxburn. Livingston does not feel homely, you are just part of a big, big town. You don't know your neighbours in the next street. In Linlithgow you were always out and about on the High Street and people knew you. Livingston is remote. What I like best about it is the house."
"We helped to design the Ability Centre at Carmondean. The Council, Head Injuries and Disability West Lothian were in a purpose built unit and we had everything to hand. Then four years ago Disability West Lothian lost their funding and had to move out. Plus now the Council have taken the Ability Centre back and they are putting in a Library again and Council Services. This means probably losing the Ability Centre for people with disabilities. The Council is just making a mockery of everything. They want to make money, but they're shutting down everything. We help a group on a Thursday night called the FABB (Facilitating and Breaking Barriers) club, which is Council based, but the Council are putting so many rules in, it's unbelievable. Like Risk Assessments, I know they have to be done but Risk Assessments for crossing a road from one side of the Partnership in Bathgate to the other side of the road. The Council are themselves putting up barriers and don't understand the groups. We have a senior group, a junior group and an in-betweeners group. One week we are in the Centre doing activities and the next week, we do activities outside or go for a meal. But at one point the Council wanted us to stay in, instead of going out. Because they wanted it to be like a normal youth club, but it's not a normal youth club. People with disabilities like Autism or Downs Syndrome or Physical disabilities, we have to make sure we get to do what we want. We are not going to sit in and do face-painting or whatever every week, or cooking, we can't even do that anymore."
"New legislation came in in 1983 and changed things for the better, but it could be better still. I don't notice any improvements from campaigns. I did a wee bit campaigning to try to save the Ability Centre, but not to the extent of protesting with placards. I sign petitions and encourage others to sign."
"I would like to see people being more pleasant instead of abusive. I think it is widespread. People stare because my wheelchair is smaller than a pram and children in prams point and sometimes parents hurry away and say, 'don't look'."
"The NHS is quite good, but the Government and BREXIT we don't know what is happening. I don't know what will happen to disabled people. We like to go on cruises to Europe and don't know what will happen after BREXIT. We like to go on a cruise every year. I consider myself a Remainer. Government is making a real mess of things."
"I'm not interested in Scotland becoming independent. If that happens, I will leave the country. Because everything will go pear-shaped. Food prices will rise. We have been in Norway and seen the astronomical price of food. McDonalds is three times the price of their restaurants here. Everything will to too dear. I don't think it's right for Scotland."
Hopes for the Future:
"Well apart from getting BREXIT sorted. I want good health. Disability West Lothian is the best thing that's happened, because I get a lot out of it. Although it is voluntary work, I do my bit. I was in the office from 8.30 am to 4.30 pm every day and it was better than doing a full time job. Because it is good to meet people coming in for advice. It has been good for me."
"As I said I went to Princess Margaret Rose Hospital, to get operations on my leg, so that I could walk better. Some worked and some didn't, but most of them did. It was mostly muscle release, to loosen my muscles. But the one major thing was I walked on my tip toes, so they took half of the calf muscle out of my legs and transplanted it to my feet which made my feet flat. I ended up with 114 stitches on each leg and have seams up the back of my legs like stockings. When I got that done, my knees were knocking, so what they did was brake the femur bones in my thighs and straightened them and put plates in. They came out when I was in my twenties because they grew with me and needed to come out. I've still got them under my bed in a box. They look like shelf brackets."
"I've had 17 operations in my life. The last operations didn't do well, my knee won't bend up to steps. I have a hard job getting up steps. So I don't know what the surgeon did, but it made it worse in a way. When I go out to visit friends, I have to ask if they've got steps into their house. If it's one or two I can manage. I have to take the wheelchair to the door and they pull me in. There are ways of doing things and I never give up. I went to see 'Concorde' at the Flight Museum and there was no access for the disabled, so I went on my bum up all the steps and got help to stand up at the top. I was determined that I wanted to see 'Concorde'."
Moira is thanked for her time and the interview ends.
"When I went to school my problems were compounded by the fact that I couldn't read and write and I had all sorts of problems, and of course in those days they didn't recognise dyslexia or dysgraphia or even autism. So I went through a school system that had no understanding of any of these learning differences."
Colin was born in 1966 and is 53 years old.
Colin tells us about his background, how his family were spread across the West of Scotland. His mum was a registered nurse and his father was a surveyor. His family heritage is linked to the travelling community. They moved around a lot during his childhood, Colin was born in Dumbarton, and moved to Helensburgh, then England and back to the West of Scotland, and moved to Livingston 1977.
Colin talks about his birth and his childhood health and issues with coordination and motor skills. He then shares his experiences at school and subsequent adult diagnosis of Asperger's syndrome.
"When I went to school my problems were compounded by the fact that I couldn't read and I couldn't write and I had all sorts of problems, and of course in those days they didn't recognise dyslexia or dysgraphia or even autism. So I went through a school system that had no understanding of any of these learning differences, and when I was fifteen I was assessed with dyslexia, a lady, a teacher at Inveralmond Community High school spotted it and suggested to my parents that she thought I was dyslexic. I was assessed as dyslexic but the school and educational psychologist didn't recognise the condition at all, so I came through the system with no recognition or specialist support for it at all.
"I'm also dysgraphic as well, later on in life, when I was 48 I was diagnosed with high functioning autism, Asperger's syndrome. And that came as a bit of a shock to me, I always knew there was something else other than dyslexia, but there had been so much bullying at school from my peers and teachers. It was all really messy and pretty horrible and I guess I put it down to my dyslexia, dysgraphia and dyscalcula. So I'm autistic, dyslexic, dysgraphic and dysnuemeric."
Colin tells us how due to his coordination issues he can't drive and that planning journeys can be difficult. He shares that his family taught him skills that school failed to, as they recognised there was an issue, they just didn't know what it was.
Colin discusses his childhood homes and how a later in life diagnosis of M.E now effects his energy levels and his need for accessible housing. Colin explains that he went to quite a few schools due to living in a variety of areas.
"The common denominator in each of the schools was that it was horrendous, because of my difficulties with reading and writing, difficulties with numbers, I was thrown into what was called the remedial stream in those days, they didn't recognise dyslexia or dygraphia. So I was just dubbed as lazy and put into the remedial stream, which wasn't learning support, it was very very different. There was a stigma attached to that at school and teachers or mates at school would bully you or ridicule you because you were in what they called the remedial class. So school wasn't that great but there were moments in school, like when I was in Stirling in a wee village school called Cambusbarn and there was a teacher, I was in primary 3, and she was a brilliant storyteller, and she loved history, in particular Scottish history and she gave me a love of history, she told us stories about the Wallace and the Bruce, because Stirling is really historic, there's the castle and the Wallace monument and there were key battles fought around there, she was able to bring the history to life, she was a brilliant storyteller. So I 've got her to thank cause I've got a really vivid imagination and I'm now a storyteller myself so I've kind of got this Mrs Murray in primary 3 to thank for giving me my love of history."
Colin talks about his father's role in encouraging his love of Scottish history, going on outings to historical places and about enjoying football, fishing with his father on Islay in an old Bothy, swimming, building fires.
"For me, the periods when I wasn't in school were the happiest times for me."
Colin talks about difficulties during teenage year and not feeling good, having low confidence, bullying and undiagnosed autism made this time the unhappiest of his life.
Colin talks about life after school and the lack of opportunities and general employment at that time.
Colin talks about attending Oatridge college, though he enjoyed some aspects, like landscaping, he didn't enjoy farming.
Colin shares his cycle journey to college and a typical day at college.
Colin discusses differences now and then regarding employment for people with disabilities. He feels we have a long way to go and wonders why we don't have a national programme of supported employment encouraging and providing resources for local and national businesses to employ people with disabilities.
Colin talks about local community facilities in Livingston in the 70/80's and that due to Livingston being a young town facilities were limited. The local church had a disco on Saturdays but otherwise you had to make your own entertainment.
Colin talks about local transport issues, how the bus service was poor and there was no rail services. However current additions are hopefully improving networks.
Colin talks about community responses from individuals, regarding disability, being mixed in his experience.
"We're lucky in West Lothian to have a big voluntary sector and third sector, we've a lot of organisations, like Disability West Lothian, who have put a power of work in to making life better, and the Ability Centre as well, so there is a lot of good work. There's a desire here, in my opinion, to make it better for you."
Colin discusses local organisiations and their work in setting up Dyslexia Scotland many years ago and potentially setting up an autism support service, his current local community in Howden and feeling lucky to have his bungalow.
Colin talks about changes to disability legislation and the need for social change.
"We have to encourage society to embrace us, we are part of society but I don't feel, as somebody with hidden differences, that I belong or…that there's a place for me in their world, in a conventional sense. I don't feel that I fit. I think that's probably because I'm autistic, I feel like a square peg in a round hole."
Colin discusses participation in disability related campaigning, being involved in a campaign when TAKE West Lothian lost funding and his previous volunteering and paid employment with them.
"Myself and Sammie, campaigned in a service users campaign to ty to save the project but sadly we didn't succeed."
Colin talks about involvement with the Leonard Cheshire Active Citizenship academy for disabled people. About how he now uses his public speaking skills to go out and talk about his journey and raise awareness of hidden disabilities and autism. And taking part in some disability rights campaigning.
Asked: Do you feel valued?
Colin talks about feeling happy and valued thanks to volunteering and being part of the Craigshill Good Neighbourhood Network.
"If your talking about do I feel valued by society, I'm not so sure about that because only 15% of people on the autism spectre are employed, this really shocks me. It's very difficult for me to say that I think that we fit, if only 15% of you are employed, that says it all really."
Asked: What changes would you like to see in your local community?
Colin feels not much happens in Howden, it's very quiet I would like to see community members getting more involved, to be more proactive.
Asked: Do you have concerns on issues on national level?
Colint states he is very worried about society and the type of world we are living in and about increased intolerance towards disability.
Asked: Do you have concerns about the NHS, the Economy, Employment, Scottish Independence or Brexit?
Colin is very concerned and shares his thoughts and fears about the NHS and trade deals with the US. He also shares his thoughts on Scottish Independence and Brexit.
Asked: Is there anything you'd like to add?
"I think that its easy, having lived, I'm 53, and having a late diagnosis of autism at 48, and having had an assessment of dyslexia when I was 15, I think its easy when you look back to kind of, to your school days, and I'm sure there are many people who have struggled with a whole range of disabilities, who would concur with me and say that, my age group, would concur that life wasn't easy growing up in a system where there wasn't recognition or attempts to accommodate these differences. And I think that, I would like to think that, we've moved on and that we've definitely made progress, I think that we need to now not rest on our laurels and we need to continue, as people who struggle with disabilities we need to continue to bang the table and the drum to make sure that we're valued and we're not patronised and that there's a place for us in society, and we have to continue to struggle to claim that place, it's not going to be given to us, we're going to have to fight for it but we need to. We've got, I've got a responsibility to those around me, I feel, to use my story and my experiences with my hidden differences to make life better for others. That's what I feel I need to do."
Interviewer thanks Colin and ends the interview.
"Quite a few People in Gogarburn wanted to vote, we completed the form to be on the register, however they said, 'sorry we cannot accept a hospital as a fixed address'. So we decided to complain, we complained to the Registry Office about it, they said, 'we can't help you, you'll have to go through the courts'."
James lived in West Lothian and now lives in Fife and is in his seventies. He spent nearly 20 years in long stay hospitals, including 10 years in Carstairs, and was a patient at Gogarburn for many years. When he left hospital he moved to Craigshill, and continued to attend work within Gogarburn for 2 years, making boxes for a Whisky company. James has been involved with People First for many years, and was involved in many campaigns, including getting the right to vote for people in long stay hospitals, and the closure of long stay hospitals. James is still involved with People First and continues to campaign for equality for people with learning disabilities.
"Hi James, I would like to thank you for taking part in the West Lothian Back To The Future oral history project, the date is 9th January 2020 and we are at People First on Easter Road, Edinburgh, can you introduce yourself please James."
"I'm James, I was in long stay hospitals for quite a few years, some days it was good, some days it was bad, depends on the staff. Some staff didn't like the way you dressed or what shirt you had on or what troosers you had on, or what socks you had on, they were never happy."
"Can you tell me how old you are?"
"I'm in my seventies."
"Seventies, and can you tell me what year it was that you went into a long stay hospital?"
"Early sixties, '1966."
"Where is that?"
"The other side of Kinross, it's an auld folks home now."
"Can you tell me about your childhood?"
"My childhood was not very good, I was born in 48, 1948 my mother moved about a lot then she met up with my step father and things were ok although still a bit shaky."
"Can you tell me about your disability?"
"Aye was not good at reading or writing, at the age of five I went into Bandrum, that's one of the homes in Dunfermline, and I came out when I was about ten, mother took me out when I was ten years auld, the only reason she took me out was to look after her, because she was dying of cancer."
"I ended up going to McLean's special school in Dunfermline. And I went there till I was about sixteen, but I never got the chance to go to the full school, because I had to take days off to look after her, because she took fits, some people call it fits but some people also call it a seizure."
"To begin with at aged five I went to normal school, but I only got six months at normal school, at five and a half my mum wasn't keeping too good and my step father would get up and go and they weren't settling down, so she couldn't look after me. So I ended up going from there into Bandrum care home and I was in there for nearly five year but there was no schooling."
"So what did they do?"
"Just ran about."
"That's all you did every day?"
"Did you do any structured activities or anything?"
"We just went for walks."
"What were the staff like?"
"Some staff were fine, some staff were not fine."
"What about the other children who were there, did they have disabilities, or were there other reasons people were there?"
"There were other reasons why people were there, after a year the chickenpox broke out, that's what kept us in, and I did not get on with other boys, or other kids, the reason was I had a stepsister in the same place and they kept us separate."
"Was that quite a normal practice then, to keep siblings apart?"
"Yes, and I did not take that easy, I had a bad temper, I used to throw chairs about, and throw tables up in the air."
"Because you missed your sister and you wanted to be close to her?"
"Yes, because my mother asked me to look after her, and we were split up."
"Tell me about your early adult life?"
"I lost my mother when I was seventeen, me and my step father could not get on so I ended up going onto Glenroman hospital."
"It's in Kinross."
"Why did you get admitted to hospital?"
"Because I fell out with my father, and I was sleeping rough, and while I was sleeping rough my grandfather on my mother's side died, he had a bit of money, and he thought if he got me put into care he would get it."
"What was life like in the hospital?"
"Not too good."
"What was a normal day like?"
"Get up in the morning, wash, make your bed."
"What time did you get up?"
"Half seven in the morning."
"Did you have any choice in that?"
"No, and sometimes while I was in hospital I did not have an easy night. What I mean by not having an easy night is, I did not go into an easy sleep. I'd go into a wet sleep, and I'd wake up with the bed swimming, even the floor was all wet, I was not even aware of doing it."
"Must have been a bit distressing for you."
"How long were you in the first hospital?"
"I was in Glenroman for two years, that two years I could not settle down. I had a habit for what do you call it, walking out the door and disappearing. And they brought me back so many times, I ended up getting put from there to Carstairs."
"How long were you in Carstairs?"
"Nearly ten year."
"What was life like in Carstairs?"
"Still the same routine, getting up in the morning, making your bed, having a shave, washing yourself, going out to work."
"What did you do for work?"
"Doing woodwork, making different things, but sometimes the staff were not happy. When I got up in the mornings they couldn't understand why the bed was wet."
"So what would happen?"
"Some staff would give me clean sheets and put clean sheets on the bed, other staff would say, 'your just gonna lie in it James'. That's what they did in Bandrum. They wouldn't change the bed and you'd end up going and lying in it."
"In Bandrum, you went for a bath once a week, you were in the bath before me, I had the same bath as you, and someone else the same bath as me."
"How many people would they do that with?"
"Four or five people, the water wasn't very clean when it came out the tank, it was very rusty, you seen the rust in the water."
"When did you get out of Carstairs?"
"About 1969, they moved me to Gogarburn."
"What was life like in Gogarburn, and why were you moved?"
"They were starting to move people out, because they wanted people to be out in the community, people who came from hospital to there, they wanted them out to give them a better chance of getting back into the community. It was still the same. You were not able to wander into the town, you were not trusted. Got up in the morning, washed and shaved, made my bed but sometimes I'd say to the nurse, 'I've had an accident'."
"What do you mean by having an accident James?"
"Can you no get up through the night and change your bloody bed!"
"I said, 'I'm not aware of it'. Some of the staff wouldn't get it through their head. They put the blame on me."
"Were they more helpful with that or are you saying that they were just the same?"
"Some staff were the same, some staff said, 'you'll just have to sleep in it'. I just left it and the woman who would come and clean the room would go in and say to the charge nurse, 'James has no made his bed'. The charge would pull me in, 'James you've no made your bed'. If I went and asked for clean sheets, I got my nose taken off."
"What do you mean you got your nose taken off."
"'Why'd you no make the fuckin bed'? I said, 'it's not my fault, I fell into a deep sleep and didn't realise I was doing it'. When I told the nurse that she said, 'oh, I'll have a word with her, she shouldn't have spoke to you like that'. She was always crabbit, a lot of the other ones, the other patients would say, 'oh that's crabbit face on'. Beware of her."
"Was there other staff you got on with?"
"Was there anything positive about Gogarburn?"
"Not really, it was like an old institution."
"Did you have any say in what you ate?"
"Nope, some days you would get a good choice and you got what you wanted on the plate, no bother, other days you got it like pig slop. Do you know what pig slop means? You've heard the words, everything gets put in the big pot and mixed, then comes out with a ladle."
"What did it taste like?"
"It was just like feeding the pigs, I'd say, 'I don't want any, I'd rather go without'."
"What about your clothes, did you have a choice in what you wore?"
"Nope, they issued you with clothes, your clothes with your name on them, but some days you couldn't get the shirt on because when it came back from the wash place, or what you'd call the dry cleaning place, it had too much starch in it, or the way it was dried or ironed made you feel uncomfortable, same with the trousers, and same with the socks, everything was uncomfortable."
"Did you have many friends in Gogarburn?"
"Not really, you could socialise but you could never trust them, no they were never real friends."
"When did you leave Gogarburn?"
"Left Gogarburn '1983, they were starting to close certain wards, and they wanted certain patients out."
"So they started to ask you, 'what would you like'?"
"I wanted a flat on my own, 'oh I don't think you'll manage in a flat on your own James, we have a hostel for you, one of two hostels'."
"No thanks, I said it's still a hospital and I don't want that."
"And I disagreed with them for quite a wee while, I disagreed with them for nearly 4 years."
"Eventually it worked, I said, 'I'm no taking it, I'm no fuckin taking it'."
"And that's how it was until one day when a charge nurse and a doctor and this social worker came into the ward and said, 'well James, we're getting fed up with you and your cheeky ideas, and your smart ideas'."
"I said, 'I'm just telling you what I don't want. I'm just being straight forward, I don't want your rubbish place'."
"So in the end they said, 'I'm gonna take you out tomorrow and we'll go round to the council to see if we can get you a flat'."
"I said, 'fine', and we went to Livingston council and put my name down there. Then went to Broxburn council and then Edinburgh council."
"I got offered a flat after six weeks, it was in Livingston but there was a snag. When they offered me the flat in Livingston it was a four apartment, three bedrooms, and the hospital wasn't too happy, I said, 'what's wrong with that'?"
"They said, 'James it's too big for you'."
"I said, 'so what, and I don't want anyone else sharing with me, I'm not bothered about two empty rooms, they can lie empty'."
"In the end they said, 'aye okay we'll give you a chance', and that's what happened."
"I moved in and I have been quite happy since, but I still had to come back into the hospital through the day to work."
"Did you get support to get your flat set up for you, furniture and things?"
"I had to do that myself."
"Must have been quite difficult?"
"I was supposed to get help but the social worker I got, her husband wasn't keeping too good so she wasn't able to come through and help me out, so I was left to get on with it myself."
"Which area of Livington was it?"
"Craigshill, just down from the fire station."
"What was the local community like for you, then, when you moved in?"
"I got a wee bit of bother but I just stuck it out. When I got the flat I was picking wee things up, buying things for the house and every so often the house would get broken into and that person would take the lot. And I ended up stopping buying things for the house. When I moved in, the first thing I bought was a new bed, the second day I went back to the house it was away."
"Was there community support for you, such as through the NHS, or anyone, or was it still through Gogarburn?"
"So how did you get there?"
"I just got on the normal bus to work and went back home at night, stayed in the house, and the next day I went back to the hospital."
"So what kind of jobs were you doing?"
"Making boxes up."
"Did you get paid for that?"
"£1.50 a week."
"Was that the standard, is that what everyone got?"
"That's what everyone got."
"How much was your bus fares?"
"They paid for your bus fares in and back or I wouldn't have gone. I stuck it out for nearly two years and after two years they finally discharged me."
"So you were still a patient?"
"I was still a patient?"
"So was making boxes meant to be part of you're therapy?"
"It was for a whisky place, for putting bottles of whisky in, you put four squares like that, and you put them into the box and that was the box made, and then the next one, and the next one. There'd be about 150 people working in the one unit doing it."
"150 people? So was it like a warehouse?"
"It was just a warehouse."
"Within the grounds of Gogarburn?"
"In the grounds of the hospital, in the hospital."
"Were there other roles that people could get or was that the only job?"
"That's the only job I got. There were other jobs like pitting stuff in plastic bags that certain people got, but the one I got was packing boxes or if they ran out of boxes I did labels one to a hundred, putting a bit string through a hole and tying a knot in it, they went to a shop, perhaps a clothes shop, the shirt got labelled to tell the shop what was to get done to it."
"Going back to your flat, in Craigshill, did you go to any community facilities or anything, what were they like at that time?"
"There was nothing like that, when I came home it was about 5 o'clock at night."
"So you were just going home?"
"Just going home, hoping that stuff was still going to be in the house, sometimes there was nothing left in the house, like once someone walked away with the fridge, someone walked away with the bed."
"They knew you were out all day every day as well?"
"They'd come in through my garden door, away went the bed, away went the fridge."
"How long did you live in that flat?"
"A lived in that flat for about four years, and then from there they moved me, I asked for a house. They got me a house in Ash Grove, still in Craigshill, upstairs downstairs and it was still the same way the bed still went missing, the TV went missing, occasionally the couch went missing."
"Had you stopped working at Gogarburn by then?
"I'd stopped working at Gogarburn by then."
"What were you doing, at that point, with your days?"
"Did you have a job or were you going anywhere?"
"I stopped working at the hospital because I fell out with Jim, he was in charge of making the cardboard boxes. I come in that morning, that Friday morning, I got my bus fares and went down to my work. He was paying people their £1.50, 'I'm no putting any wages through for you this week'. I said, 'what for'? He said, 'I don't think your worth it'. I said, 'if that's how you feel you can stuff your job', and I walked out."
"Did you get your £1.50?"
"No, that week I got nothing, so I just said to him, 'stuff your job, I'm not gonna stand here and listen to your abysmal cheek'."
"What did you do with yourself after you left there?"
"I stayed in some days other days I went out and got my messages, some days I just went for a walk."
"You just filled your days with your own time, how did you find that?"
"A lot better. I just got fed up with him and his sour face, or his sour puss."
"By that time you'd been in Livingston for how long?"
"I was in Livingston for twelve years."
"Did you ever feel part of the local community?"
"I couldn't settle down, my house got broken into so often."
"What prompted you to actually move out?"
"A decided to look for a house somewhere else, I ended up moving to the other side of Fife, that was my choice."
"So what was life like once you moved there?"
"A wee bit better."
"Tell me about any campaigns that you've been involved in?"
"I've been involved with People First for a very long time. Trying to get views on mental disorder changed. Getting people out of long stay hospitals, and getting them closed. We managed to get Gogarburn and other hospitals closed, however not every one of them actually closed. Some of them changed their names, like friends rejects(??)."
"Can you tell me about your voting campaign?"
"Quite a few People in Gogarburn wanted to vote, we completed the form to be on the register, however they said, 'sorry we cannot accept a hospital as a fixed address'.
So we decided to complain, we complained to the registry office, well the council, about it, he said, 'we can't help you, you'll have to go through the courts'."
"And so quite a few o us, Jimmy and Ali, those two have since passed away, Ali spent about 45-50 years in Gogarburn, Jimmy spent about 40 years in hospital, and I spent about nearly 20 years in different hospitals down the line. I'm the only one that's still here."
"I got told, 'you're not allowed to vote because you have no fixed address', so you had to challenge it, take it to court."
"So we applied for legal aid to get a solicitor to help us."
"We went to court that day, the patients who had been in hospital for five, twenty, fifty years, we said, 'it is a fixed address, it cannot be an unfixed address'. And the sheriff looked at it and agreed, he said, 'it is a fixed address'."
"So we won that part, but before we got a chance to leave the Edinburgh Council stood up and said, 'we want to challenge the decision in hight court'. So it took about six months to go through the system. And we went to the high court that day, we were only there for about five minutes, and the judge said, 'I've passed this, it should not have been challenged'. So we walked out laughing. All that money wasted."
"Is there anything else you'd like to share with us about your experiences with disability?"
"I think disability is about not being able to read or understand signs such as bus signs or even read a newspaper."
"All that time I was in different hospitals, I was never offered reading classes which would've helped me."
"So you didn't receive any education?"
"No. Not even in Bandrum, that five years in Bandrum there was no schooling. I came out of the home and stayed with my ma, a never got the chance to go to school, because some days I had to stay off and look after her. So my schooling was wasted, a never got a chance. They turned round and told me I didn't need it. In Carstairs, they paid for a teacher to come in, other ones got it, I never got offered it. I asked for it and they said, 'oh your not so bad James, your managing'."
"It takes me a while to read a packet telling me how to cook it, or even how to work a microwave, or even how to work a washing machine, it takes me all my time to do these things."
"So how old were you when you finally got out of hospitals?"
"I'd say about the age of 40."
"Did you get support after leaving Gogarburn?"
"No, I was supposed to get help from the same woman social worker that helped me get the flat, but her man got seriously unwell, so I was left to get on with it myself. And after she left Gogarburn they did not replace her."
"They then started to put people into hostels, or if a staff member had a bigger house, they took patients in, by doing this they were setting up small hostels."
"Did you ever get to go on holidays or days away, while in hospital."
"A holiday, yes twice I went down to Whitley Bay, you sat about the hotel, you weren't allowed to go for a walk or go anywhere without staff. What's the point going on holiday if you can't go for a wander around the shops? Get to choose? We never got that, you went out with staff six or seven patients at a time with two or three staff."
"Did you enjoy your holidays?"
"No, you had no money in your hand to spend."
"You never had any spending money?"
"Aye, £1.50 sometimes £3 but you weren't allowed to walk into a shop yourself or pick up a newspaper. You were allowed to go to a pub however all you got was a glass of juice."
"You weren't allowed to choose?"
"Nope, you weren't even allowed to choose the shirt you wore or the troosers you wore."
"Can you tell me about People First?"
"I've been involved with People First for a very long time, fighting for the closure of long stay hospitals, people should live in the community."
"At that time it was called Lothian Rights Group, that was in 1984 and from 1989 it changed it's name to People First."
"The Scottish Office called the closing of long stay hospitals the Keys to Life, they all wanted different things."
"Did you have protests?"
"What kind of things did you do?"
"Protesting to the government through different committees, we went to big meetings, asking when were hospitals going to close, all that stuff. I shared stories with them, they published stuff in different kinds of magazines, there was a book written about Gogarburn called Between the Devil and the Deep Blue Sea."
"Quite a few patients who were involved in People First at the time have moved on."
"A few of us got together and wrote different stories about the staff and the hospital, and how we were treated."
"Is that the Gogarburn lives book?"
"Yes, some of us never used our names, some of us used different names. Most of the stories are true, we nicknamed some of the staff. There's one of the staff we used to have, nurse Rodgers, we used to call her Crawly Arse, she used to follow the charge nurse everywhere he went, if he went out for a smoke, she went out for a smoke, if he went across to get his dinner, she went across to get her dinner."
"One boy on the ward one day said, 'that's Crawly Arse away for her breakfast', and Doddy says to Christopher, 'don't call her that', he said, 'she follows Rab everywhere he goes'."
"It's just how the patients pick up things."
"Nothing got passed them."
"What is People First involved with now?"
"We are involved in changing the law regarding mental health disorder."
"Is that the DSMV (Diagnostic and Statistical Manual of Mental Disorders) classification of learning disability?"
"Yes, if people with metal health issues commit a crime they don't receive a fair trial."
"Also we want to end the practice of being able to send people with learning disabilities into hospital indefinitely."
"Is People First helping people with decision making, with things like Advocacy?"
"People First have created a framework to change decision making laws, to support people with learning disabilities in making decisions, rather than having someone else make their decisions via Guardianship. No one should be under Guardianship. Guardianship is just a waist of money. Guardianship has to go through court for it to become legal. It means your rights have been taken away from you."
"So some people have been taken off the board of People First because their parents have applied for legal Guardianship."
"Yes, by applying for Legal Guardianship they effectively took the rights away from that person."
"This means the person cannot vote or do anything alone. The parents make the decisions."
"To me this is money wasted, as it takes a solicitor, a psychiatrist, a doctor's report, a lawyers report. And when it goes in front of the judge the decision could take three years. You don't know how long you will be under this. All that money is wasted. I think it could be done in a better way. Also the person who gets control of you also gets control of your money, and they don't have to let you know how much money you have coming in each week. They can run off to the book makers or the pub with it and there is nothing you can do about it. Very few people have been able to challenge it. Your rights have been taken away from you."
James is thanked for his time and the interview ends.
"So, that, hopefully, people can see, that people with disabilities can lead their lives the same as anyone else would lead their life, apart from any perhaps physical restrictions, there's nothing strange or different about people with disabilities."
Frances is 80 years old and was born in Threemiletown, West Lothian, she was a carer for her mother and her niece, and also worked with Disability West Lothian.
Frances is asked her age and where she was born. She is then asked about her historical experience of disability. Frances explains that she doesn't have memory of disability from when she was young and that she doesn't recall anyone from her village who was physically disabled, except for 2 older ladies who were bedridden. Frances recalls a family from her village who all had learning disabilities. She believes that the reason she never saw or knew of anyone else was probably because they were in institutional care.
"People with many disabilities would have shorter lifespans than they would now, and they wouldn't get the medical help, and aids that they would get now."
Francis discusses Tippethill Hospital and it's use for infectious diseases.
"I can remember going with my mother to visit a friend of hers, an adult, who was in Bangour (Village?) Hospital, and she had been there for 5 years lying in a shell, because she had TB of the spine."
Frances shares that there used to be a lot of TB.
Frances tells us when she was 14 years old, she spent 5 weeks in the Princess Margaret Rose Hospital in Edinburgh and that in her ward, the majority of the children had been in the hospital for many years and were bedbound or wheelchair bound.
"Bangour Village Hospital, which predated the general hospital, had been built as a state-of-the-art hospital, for people with psychiatric problems, mental health problems but also with learning difficulties. The general hospital was built behind that. Gogarburn, which at that time, fell into West Lothian, seemed to have a large number of children sent there, and many of them spent a long time there. It was their homes, sometimes for the rest of their lives."
Frances tells us about Drumshoreland Hospital, it was a long stay hospital for chronic or 'incurables' at that time and that people stayed there for years.
"In Linlithgow St Michaels Hospital was a sort of, mixture of geriatric and long stay patients."
Frances tells us about her father and how he was treated with adrenaline injections in the 1930's for asthma, at least once a day, self-administered. This weakened his heart and probably contributed to his death, and the treatment was discontinued in the late 1930's.
Frances tells us her mother became an unstable diabetic and she became her carer.
"At that time, I don't remember the word being used, and there was certainly no help given, and certainly no financial help given, to her or to me. It was just something in those days you were expected to take on."
Frances tells us that she also became part time carer for her niece, who has Cerebral Palsy and that she also spent quite a bit of time in Princess Margaret Rose Hospital, and that she benefited from some pioneering surgery in the 1970's.
Frances tells us she developed ME nearly 30 years ago and is one of the longest surviving ME patients. She tells us it was, and still is very difficult to get a diagnosis.
"It was difficult sometimes to get recognition, of ME, as a medical condition, that has considerably improved since, and there is still no treatment for it."
Frances tells us about the, "special class" at her village school.
"They came from various places in West Lothian, they came by bus, I think they travelled on their own, from what I recall. And they were kept physically separate, in a different building in school grounds, and had a teacher exclusively just for them, and they spent all day every day with that teacher. These were children with what we now call learning difficulties, and they stayed there until their leaving school age, which was one year longer than the normal school leaving age, they didn't really join in with the rest of the school."
Frances is asked about her involvement with Disability West Lothian.
Frances tells us her involvement goes back at least 30 years. Initially due to her niece who did voluntary work with Disability West Lothian. At a later stage she project managed a project about employment and training called, "The Employment and Training Project" and after she left she kept slight involvement with them and then about 2 years ago became a director on the board.
Frances is asked if she'd like to share anything else?
Francis tells us about being brought up during the war and how things that would normally happen, didn't, and things that would normally not happen did. She tells us that there were many soldiers returning from the war who had, what would now be known as PTSD (Post Traumatic Stress Disorder), or physical problems, or in some cases both. Frances speaks about Linburn and the specialist burns unit at Bangour, and Professor Norman Dott, who was the leading expert at that time.
Francis tells us, 'not much was done for shellshock' and as far as she's aware people ether dealt with it themselves or ended up in psychiatric hospitals.
"Attitudes have changes, and partly they've changed because people with disabilities are now far more visible than they were when I was young. So, that, hopefully, people can see, that people with disabilities can lead their lives the same as anyone else would lead their life, apart from any perhaps physical restrictions, there's nothing strange or different about people with disabilities."
Interview ends with thanks!