I was up in the main house [of an institution for women with intellectual disabilities] at first. I don’t know why; my mam just told me it would be better for me.
It was big dorm rooms up there. Eventually I moved down to [another unit] and I got my own room.
The staff were still on duty at night though, they used to open the door at night, checking you were OK. There would have been a lot of people in that house.
When they first started talking about moving out into the community, I wasn’t too sure about it. I didn’t know what I was going to face. But I said, sure, I’ll give it a go.
I moved into a house with four other girls. That didn’t suit me at all, though, they expected me to do everything.
I used to go up to [the institution] every day after work, I was telling [the manager in charge], ‘I have to move out, I want to move out’.
My family didn’t let it happen for a long time, though, they were dead set against it. They didn’t think I’d be able to do it, living on my own.
In the end, [a support worker] came down with me to [the family home] and I told my sister: ‘That’s it, I’m moving out, I need my own space.’ And so they said: ‘Well, alright then Cathy.’
I went and viewed apartments myself, with [the support worker] and my younger sister. I saw this apartment and I said: yes, this is the one.
I have my own balcony, with a few plants, and I can see over to the river from the balcony. I have a spare room, and my sisters come and stay. My name is on the lease, and if I have any problems, the landlord comes, no hassle.
I go to work from 10.00-14.00, three days a week, but I get the bus so I’m out from 8.30 to 4.00.
I go to the local day service on Wednesday mornings, and I’m into all the community activities here, the youth club, the ladies’ group.
The neighbours are friendly, they called over when I first arrived, to see if I was ok.
I don’t mind being here on my own in the evenings, I’m tired, I’ll watch a bit of telly. I don’t stay here on my own on the weekends, though, it might be a bit lonely.
So every second weekend, I go to [her care worker]’s house, she lives with her partner on a farm. Every other weekend, I go and stay with my friend [Bernadette] in [town]. There’s no staff there, just the two of us for the weekend.
What else do I need in my life? Nothing, I’m happy the way I am.
My story is not easy to tell. I was born in 1957, I don’t know why my mother abandoned me, maybe she was poor or maybe she didn’t want me. As soon as I was born I was sent to a Catholic institution.
Then one day, I was called and they told me that I could go and live in a flat and that I could choose whom to share the flat with. I discarded so many names and then I said yes and, my friend Francesca said yes, that it was fine for her too and we moved.
When we saw it for the first time, the flat was empty but cool, then we chose the colour of the kitchen and I chose light blue. There was the light-blue kitchen as I wanted it to be.
No, she doesn’t! She comes back because she always forgets to make her bed in the morning. She makes her bed. I make mine. Then she prepares coffee.
After that, we get ready: we check the lights, the water and the gas. Then we go to the bus stop and wait. We get off in Moccia. We walk to the residence and ring the bell: ‘Who is that?’ asks Franco. ‘It’s us!’
We go upstairs. We are independent at the residence.
I’m in charge of cleaning and doing some work in the [pizzeria’s] kitchen: I wash the salad and cut it to put it on the plates. Then at about 4.30pm we go back.
The bus brings us back home and as soon as I arrive, I immediately have a shower and I relax watching TV and then go and do some shopping if I need to or I go out and have a coffee at the cafe.
I like my life at the moment and I wouldn’t change it; living in a flat with Francesca is fine. I’ve learnt so many things and I like to do them!
I’m quadriplegic - I cannot move either my arms or my legs. I am from a family of seven and it was not easy to manage my impairment. So when I was five, I moved to a big institution in a large town – my father moved with my whole family to be closer to me.
At the beginning it was difficult: I felt disoriented and I missed my family. But later I found my feet. In the institution I met people living with the same condition and I became aware of the difficulties I was going to face.
I graduated as a business secretary. When I was 18, my father died and I needed to work. The disability benefit wasn’t enough. We created a cooperative society to obtain jobs to carry out in the institution.
In 1982, I found an external job. I wanted to work and I wanted a real job, with other people.
Together with the institution and support from an NGO, we found suitable accommodation for me in a community in the centre of Italy. It was a community not only for people with disabilities.
It was a completely different experience compared to the institution: there were no time schedules besides the meals and we had to organise our own days. I used to write for an internal magazine and we also used to deal with social problems... we were very active!
In this community I met my wife, Paola. She visited the community with her friends from an institution in Tuscany. I went to Tuscany to visit Paola.
I met the director of the institution. When he saw that I was interested in Paola, he suggested that I could be integrated into a family shelter nearby, so we could be closer and avoid the journey. I moved in 1990. I spent two years at the family shelter. During this time Paola and I were preparing the documents for our wedding.
Getting a flat became an urgent necessity as Paola and I wanted to get married. But the bureaucracy was complicated.
Our problems in getting married were not only bureaucratic but also practical. Paola’s parents were opposed to the idea, they didn’t want her to live with me; they would rather have her at home with them.
But Paola was very determined and she won. We got married in 1995. We made it. We got what we wished for, what we wanted.
Now we live together. We have a care-giver who stays with us all day and sleeps at our place. She does the shopping and cooking. We get along with her.
During the day a guy comes to help her with the housework. Both Paola and I work in the institution’s cooperative societies: I am in charge of the wheelchairs and Paola of the estate office.
During the summer, we go on holiday to the seaside with a group and we spend two weeks there. We spend important holidays with Paola’s dad.
It was a journey in stages, but a very fruitful one.
I was the son of a single mother who left me with my grandparents because she wasn’t able to take care of me. I spent my early childhood with my grandparents and three young and single uncles in the countryside.
I went to school up to secondary school after I had failed four times in primary school.
A difficult period began; I started drinking, did occasional jobs, and started working as a pizza man for a long time. It is a confused period, of drinking, messy days and I often slept in the street because I was too drunk. At home the relationships got tense: my uncle drank too and sometimes beat me.
I thought I was another person and sometimes when I drank I slept out during the night ... it was a life that could not continue for a long time ... in that period I didn’t work much. I started working when I was 20.
During this period, I got in contact with a “lady of the province”, who maybe was a social assistant who pointed me out to the local Mental Health Centre, where I met Dr Romano who sent me to the family shelter created by the institution.
I owe a lot to the institution because ... I have to say another thing, it helped me also give up drinking ... I used to drink ... yes, I used to drink.
When I turned 25, I got my secondary school licence by attending evening classes. When the family shelter was closed because of administrative problems, I was moved to the institution. I consider it to be a positive experience too. The institution had some more rules, a more rigid time organisation compared to the family shelter.
I lived in the institution from 1990 to 2003. My addiction problems continued even during the institution period; my health worsened too. I succeeded in giving up drinking when I was 34. On 15 May 1995, I gave up drinking.
In July of the same year, I met my present partner in the institution. I applied for social housing and I received a flat where I gradually moved. Moving to an apartment was for me a big change: I bought the furniture with my partner and together decorated the flat.
I had a life ... having a house feels like I won the lottery.
My life routine has changed: I invite friends over or I’m invited by them. I decide my life routine together with my partner: the house is a completely different thing.
My current condition is independent living. I live with my partner, we take care of each other, and I’m satisfied and happy because I succeeded in changing my life. I don’t live in a protected apartment with an assistant: the responsibility is entirely on me and my partner including the costs and everything else.
I’ve been integrated in the social cooperative society linked to the institution and I’m working again as a pizza man. I’m only assisted in money management: some money is provided directly to my bank account and some is provided weekly in cash from the institution’s administration for me to pay daily expenses.
I’m supported by the institution’s psychiatrist.
Now I’m waiting for social benefits in order to do what I like, such as looking for mushrooms or going around with my car.
Thanks to the family shelter and the institution, I started a regular life.
I had been living in an institution since I was seven.
I was chosen for relocation to supporting living and underwent training in the training flat. The training apartment looks like a regular flat, with its own living room, kitchen, bathroom and equipment such as washing machine, unlike all other ‘rooms’ in the institution.
I learned new skills like cooking, cleaning, taking care of money.
Several months ago, other clients and I moved together to our own supported living flat in the centre of the town, where I live with five other people (two in one room).
There is also one room for instructors, who have been living with us (one at a time, altogether four rotating in shifts).
I was afraid of living outside of the institution for the first two weeks, but then I settled very well and now I am not afraid anymore – except for the fact of living on the highest floor.
For the future, I have a dream of being able to work as either a chef or a cleaning person in the restaurant and to have my own little house with a big kitchen.
I am particularly happy about being able to make my own plans, decisions and choices, especially over the weekends.
Although my daily plans are quite similar to what they were when I lived in the institution, now I can choose what I want to do.
I have more privacy and I do not need to wake up with others very early in the morning. I can decide whether to do some writing, or sit and have some coffee in peace.
Before I moved to the [supported living] flat, I lived in an institution.
The main difference is that in the institution I had to share a room with seven other clients – all of them were girls. The boys had a different room in the same section of the building.
Now I share a room only with one girl – she is my best friend.
Last year, I was told by the director of the institution that I had been selected as one of six individuals for deinstitutionalisation.
The director had a meeting with all of us and explained the process of training and moving to the flat. They provided us with information about what it would look like and what we can expect. I was asked whether I would be willing to move to the flat and I agreed; I was looking forward to moving to the flat.
As the first step, we moved to a ‘training flat’. The director described the whole process to us – that we would go to the training flat to learn all the skills necessary for independent living and, after that, we would move to a supported living flat, outside the institution.
We learned how to prepare food, wash our laundry, iron our clothes, how to count money, how to go to a shop and buy things, how to buy tickets for the train or bus.
Sometimes we went for walks with our instructor to learn how to get oriented in the town.
A year ago, we moved to the supported living flat. We call it ‘home’.
At the beginning, I was afraid to go there, because I could not imagine what it would look like and I did not know anybody in the neighbourhood. The flat is located high in the block of flats and at the beginning I was scared of the height. I did not even go on to the balcony. Now I do.
Now I have some friends in the block of flats – three girls from the lower floor. Sometimes we chat when we are waiting for the lift or when the girls play in front of the block of flats.
I do not have keys and never spend time in the flat alone. We always have some sort of supervision or ‘company’ from the instructor or another employee of the institution.
I would like to visit my family one day, but I don’t believe it will happen. My family visited me only once.
I would also like to live even more independently than now – having my own family. But I don’t know whether it is possible, it’s just my dream. My dream is to have a proper job outside the institution.
I would like to work as a nurse for older people. I want to earn money since I only have my disability pension, which is very low.
I come from a village in eastern Slovakia. I still have a grandmother there, who I occasionally visit.
Before coming to my social services home, I lived in the children’s home in the nearby town. Looking back, I mainly remember the strict rules applied there. I was allowed to go out only for two hours a day and if I broke those rules, I was punished; I was not allowed to go out the next day.
When I was 18, I had to leave the children’s home. According to the rules, when somebody finishes their education and becomes adult they have to leave.
The home’s director arranged for me to move to a social services home.
I currently live in the supported living flat operated by the institution. I share my bedroom with one roommate. This does not grant me the privacy I dream of. The kitchen is next to my bedroom, we make our own breakfast together there.
Since having supported living, I can go out unaccompanied. However, I cannot leave unnoticed, as supported living is within the institution without a separate entrance.
I must also tell the social worker when I want to go out. Sometimes I visit the leisure centre in town. It runs leisure activities for the institution’s clients, once or twice a week.
I regularly visit the Labour Office in the nearby town. I have to go there, since I am unemployed. I regularly meet the official to get job offers or other activities aimed at finding job.
A year ago, I finished a nursing course organised by the Labour Office. I could be employed as a caregiver, but because of the high unemployment rate, I still have not been able to find a job.
Before completing the course, I was allowed to assist caregivers, for example doing the laundry, giving clients something to drink. Before I attended the course, I was not allowed to feed clients, the course is necessary for feeding.
I would like to work as a caregiver; I want to use the education I got during the course. Within the institution, I had worked as a caregiver and as a handyman. I also applied for a job outside the institution, but have not been successful yet.
Not being formally in the deinstitutionalisation process, I did not get training or consultations on the process. My current situation allows me to make small everyday decisions mainly on what I am going to do during the day.
The choice and control I have over my life is limited because I am without almost any income. I receive just small social benefits and sometimes also an intermittent salary for occasional working activities. With almost no income, I am not even able to go out for a meal, to go shopping, etc.
In the future, I would like to find a job and to live outside the institution in a small flat, for example. I would prefer to live there alone. I can even imagine moving to another town, like Bratislava since there are more job opportunities and higher salaries.
I also think that, like many other people from the town, I could go abroad to work as a caregiver there. However, I am aware that it might be difficult since I do not speak a foreign language.
All names used in these stories are pseudonyms.