Chapter Two - The views and experiences of people with intellectual disabilities
The information presented in this chapter is based on the views expressed by participants in four focus groups held in Dublin, Cork, Navan and Galway, respectively. All of the participants had an intellectual disability and some had verbal communication issues. However, for the most part, they were able to communicate effectively and to give their views on issues affecting their lives. The participants also varied by age, background, level of disability, and living arrangements. Thus, while some participants lived at home with their families or in independent accommodation with appropriate supports, others lived more restricted and regulated lives with staff support. Everyone was over 18 years of age, and as indicated in Table 1 above, the three groups of people with intellectual disabilities were recruited to reflect three different age groups: 18-30 years, 31-45 years, and 45-65 years. Each participant was allowed to bring their Personal Assistant or someone they trusted into the group if they felt they needed support and some did avail of this opportunity.
Further to the questions listed in the topic guide, the discussion focused on the life they would ideally like to live and what choices they would make regarding their accommodation and social lives if they had sufficient supports and resources. However, since some participants had difficulties visualising an alternative lifestyle, the groups began with a discussion of things they like doing and activities they find difficult to do.
2.2 Activities people with intellectual disabilities like to do
The three areas participants liked doing fell into one of three broad areas, socialising with friends, work, and home. While some people were able to carry out these activities more or less by themselves, others required support from staff in their service, a family member or another support worker. Everyone said they liked socialising or 'hanging out' with friends, although it would appear that the reality for many people is that they did not have friends outside their service and that few of them met with their friends at weekends or during holidays. The younger participants' interests were similar to those of their peers - listening to music, going to concerts, texting their friends, and watching TV and DVDs. The younger participants also used computers more than their older counterparts and many were involved in some form of active sport. The younger participants use emails to contact each other but, unlike their age-related peers who do not have disabilities, no one is a member of a social network. Older participants preferred to watch TV (typically soaps for women and sports or documentaries for men), listen to music, read books, write poetry, or simply stay at home. While some people of all ages went to pubs with friends or family members, some found the experience very enjoyable, while others found it somewhat distressing. The older women enjoyed cooking and looking after their homes.
Most of the younger participants said they would like to work in a job where they could earn money and wear nice clothes. However, at present most don't work outside their service due to their personal circumstances and difficulties in finding suitable employment. If this were to change they would need help in securing the job in the first instance and in travelling to and from the job. Most of the jobs mentioned by participants as suitable for them were quite basic, such as working in a crèche, restaurant or music shop. However, some participants have phobias, such as the fear of getting dirty, which would make employment difficult to them. A number of the older participants who currently have jobs said they enjoy the experience and the sense of independence it brings. Some people who used to work in regular employment no longer do so because of the recession or changes in their personal circumstances. A few individuals spoke of their desire to start their own business, although none of them were too optimistic that it would ever happen due to their disabilities and a lack of encouragement from their families.
Everyone would like to have more friends and to socialise with them more often than at present. However, there would appear to be limited opportunities outside of the services for people to meet their friends or to meet new friends. Some said they would like to have a boyfriend or girlfriend but personal relationships are rare. Some participants also feel unsafe when they go out at night and, as a result, while some would like to go dancing or clubbing, they rarely do. Thus, for many people, their social life is restricted to people and places where they feel safe, with the result that quite a number of people limit their friendships to people they meet in the services and their families at home. One group associated independent living with being able to meet their friends and family more often. In spite of the perceived importance of socialising for these participants, socialising is restricted by a number of factors including concerns by staff and family members for the person's safety, transport problems, distance, the cost of employing a Personal Assistant, a natural shyness and a lack of confidence on the part of many people with intellectual disabilities.
Some initial verbatim comments relating to these three areas are outlined below.
Socialising with friends
I like going out with my friends. Going out for lunch or dinner, or to the O2 or town, something like that.... I meet my friends in the service.... I like going out with friends and family to cinema or something.... On Monday we do friendship and I like being with Seamus.I like to do basketball. I have a coach and we practice for the match. I don't do sports but I do swimming for the Special Olympics.We go to the pub on Saturday nights... I am not allowed out after 10pm. It gets dark early. There could be someone watching you or following you. I go to the pub with my support worker on Friday and I buy her a cup of tea. I like bingo. Sometimes we go dancing, on special occasions at Christmas.... I go to an Irish session in one of the pubs on Thursday and I have a lot of friends there. I also go to the cinema a lot.It is hard for me to go to the cinema. The film is over at 5.30pm but the Nifty comes for me at 5pm. I don't go to the pictures because it is hard to get home.Sometimes I buy a ticket for the pictures and then food. I had a problem about it. Some people told me to stop drinking and I just wanted to watch the film and I didn't know what time the film was finished at. I don't go to cinema now. I go to shops.When they use the 24-hour clock it is hard to understand - 18.15 is kind of hard to understand on the posters.I used to find it hard to know how much money it cost for the ticket and the food. Finding it hard to actually add it up.Staff go where I go to help me. I go to the pub in my wheelchair. I pay the PA (Personal Assistant)to go with me. I can come home when I want if I am with my PA.You have to be home early because the staff have to go home. They finish at a certain time.Sometimes my girlfriend plan for the future. It is like you are getting married.....I used to have two girlfriends but I don't have one now.I would like to live with my boyfriend of 11 years. I would do everything for him - cleaning and cooking. He has his own house and I have my own house and we see each other during the week.I have three friends.... I have mammy and daddy.I have a lot of friends but I don't see them too often.I go to the cinema and meals with my friends.I have friends to talk to.I would like to go out more but there are cutbacks going out at the weekends.I would like to go clubbing more and meet up with more friends.I have a bus pass and can go anywhere with staff.... I went to the museum on the bus.I have friends in the workshop and the house. I meet up with special friends. It is nice to have friends. They help you if you are upset about anything.Some people I don't want to mix with because some days I am tired from working and I wouldn't be in the form for talking, so I just sit and watch TV. I do be tired from work sometime.I would like to meet more friends.I have a special friend I can trust and tell things to. I have other friends too.
I would love to get a job and I don't have a girlfriend yet. I will get one when I get older though I don't know how to get one. I like to work in an office. My uncle works in an office. I have never worked in a job. I would like to work with him in an office. My uncle told me all about it.I work in the hotel but my hours are cut down. Things are very quiet. I would like to work more hours for the money...I would like to work but my boss won't let me. I used to work polishing furniture but I gave it up - it was boring... I used to work in a pub. My favourite job is in cinemas. I would love to work in a restaurant and serve people food. I would love that...I worked in a shop in Santry with my mam's brother. I love working. I get the bus up and back... You know when you get a job and you have to do important stuff like serving dinner, you might have to carry plates and give them to other people. I would like to work in a restaurant. It could be good.I have a job. I work in a crèche and I love it. I love kids. You get paid.
I love living on a farm. You can see calves being born and canaries hatching out. My dog had puppies in December. It was really funny to see them playing.I like to cook bacon and cabbage or chops... I like watching Emmerdale or Coronation Street and different programmes that are on - Fair City. In the morning we have our breakfast and go to the workshop at 9. We come home at 5 and I put on the cooker and put on the dinner... I like working and listening to my CDs and DVDs, listening to the news, and watching the soaps. I live on my own and I like tidying my own house.I like writing poetry and watching television, especially BBC2.At weekends, I laze about and listen to my CDs. I go into town first and have a late breakfast. I tidy the house on a Sunday.... I tidy the house and go into town on Saturday... I go to the pub with my support worker... We look at rugby.... I look at Fair City, what we want to do ourselves.
In summary, these participants like to do many of the same things as their peers throughout the country. However, as the following section shows, they encountered more difficulties than others because of their disabilities.
2.3 Difficulties experienced by people with intellectual disabilities
Many participants said they found routine tasks difficult and that they needed support with a variety of activities such as cooking, shopping for groceries and clothes, using transport and getting around town, going on holidays, using local facilities, reading and writing, going to the cinema or pub, using technology, managing money, keeping safe and healthy, finding suitable employment, going to the doctor, crossing the road, and homework. Some tasks, such as working in outside employment or driving a car were perceived to be impossible by themselves or were deemed to be inappropriate by their families or carers. Conversely, most participants have been taught by their services and families to do many tasks by following a routine that is familiar to them. Some, for example, have learnt how to read bus timetables and to know where to get on and off a bus. However, this can still be a problem if they miss their regular bus.
In general, older participants and those who currently live in independent accommodation tend to experience fewer problems in doing routine tasks than their younger counterparts. They have been taught how to cope with difficulties through formal lessons and life experiences.
Grocery and clothes shopping is one area that presents difficulties for some people, as illustrated by the following verbatim comments.
I go shopping with my mam and if she tells me to go and get milk I go and give it to her. I know where everything is in the shop. Sometimes I go to the shop for a sandwich or a drink. I do shopping with my mam and sometimes on my own.I go shopping on my own because I know the shop really well. I know where all the stuff is, newspapers and stuff you have to get for lunch. I use a list to help me remember things you might forget.I sometimes forget things in shops. On Sundays I get a newspaper for my nanny and my mam will write down the name of the paper that I have to get. I know how much it costs and the right change.Sometimes you have to add up the money and see how much you have if you are paying for your food to see how much money you give them.I always go to Superquinn. Sometimes I go with my mam. It is very difficult for me and I have to be very careful with the traffic lights. Every time I cross the road, my mam holds my hand because it is very dangerous. I need to look the way mam does and listen for the cars coming. Mam won't cross the road unless the green man is lighting. It is just very hard for me to cross a road.I go shopping with my support worker and my coordinator and they help me out. I know how much things cost and how much to give in.Staff write down the shopping list and the staff give in the right money for it. We go with her to help her carry back the shopping to the house, anything we need for the week. Staff help us pick out clothes and we pick what we want.
Shopping for clothes
I go with my mam to Drogheda. Sometimes when I get jeans they are too long and they are too long and difficult to walk. Sometimes I get clothes in Diesel, or Jack and Jones, or somewhere like that. I always go shopping for myself. I never go shopping for my mam's clothes.I buy my own clothes. My mam comes with me. I like nice clothes.I pick the clothes but my mam pays. Sometimes we go to town or a shopping centre.I find it hard to know what colour goes with other colours.I know my size in clothes and I know how much my clothes are and how much my groceries are.I know what I want. I don't know what things cost but my carer keeps my money until I need it.I need someone with me if I was buying trousers. I buy what I want but sometimes they are not the right size. I get people to help me buy clothes....I can handle money ok. Staff are with me when I buy clothes.I pay for the PA(Personal Assistant) myself and we go into town to buy clothes and we had good time in town watching the rugby.I would need help buying clothes. My helper usually goes with me or somebody else. I pick them myself and I am wearing clothes I like. You have to get a number to fit them on, go into the dressing room. How much is that now? Oh, that would be too dear or too cheap, or the size might be too big or too small. You don't say anything but just go down and get a different size and bring it in and try it on....I buy my own clothes but my mammy comes with me.... I argue with my mother. She might say it is too bright or too dark..... I sometimes go with someone when I buy clothes if I am not sure of sizes....I go with my sister in law.
Many participants have experienced some difficulty in using public transport, although the majority have learnt how to use buses and trains safely. A number of participants were also worried about their safety when crossing the road. Managing money is not an issue for most people as the bus pass means that most don't have to worry about payment when taking a bus. Two people who live outside the city often find that buses are not frequent enough, resulting in their having to take taxis or look for lifts from family members or friends. Some participants across all age groups fear getting lost, finding places in town, and not recognising the number of a bus. One young woman dislikes taking the special service bus as 'everyone would be staring at you and treat you different'. For this reason, she prefers taking the ordinary bus where 'no one looks at you'. Individuals in the other groups also expressed similar sentiments.
Sometimes I find it hard to cross the road. The cars go too fast and it is very dangerous not to cross at the lights. When I cross the road at traffic lights, sometimes I don't see things good and I can't see which way the cars are coming. If you get hit by a car, you are dead like.I would like to drive... I wouldn't like to drive. If you drive and drink that would be very bad.Sometimes I missed the bus when I went to the shops for my mam but not now. I can see the number when the bus comes near. I love to get 33 bus to Swords but no buses sometimes. I go on the Nifty bus but it is awkward.If you get lost in town you might not know where you are going. Me too. I got lost when I was young.When I go the cinema or anywhere I go in the car with my mam.... I have never taken a bus by myself and wouldn't like to.... I used to take buses to town in the late 1960s and early 1970s, now I go with staff..... I have no difficulty getting buses.I walk to work every day and you just get used to it.
Most participants had been on holidays with their families or a staff member. However, while some of the younger participants were still going on holiday with their families, most said they would like to go on holiday with someone other than their family. Two young women were critical of the fact that service users have to pay for staff travel. They were also less than pleased with the constant attention from staff during their holidays. Older participants were less bothered about this provided the holiday was what they wanted.
We save money every week in the Post Office for our summer holidays, wherever we want to go. This Sunday I am off to London for 2 nights and I am excited about going on a plane. I was in London before. A few of us are going together. At least I am not going on my own as it is a very big place. I wouldn't know it. We go on holidays in the summer and the staff comes with us. I wouldn't go on my own. There are big towns I wouldn't know, Dublin and places. Galway would be all right I think.I am going to Bristol in the summer but I won't go without my support worker.I am going on holidays with my support worker and she lets me do my own things - we go shopping and walking. I save money so that it is there when I need it.I take the ordinary bus into town. If I am going to buy clothes I have someone with me.... I have difficulties getting around town. I need traffic lights to cross roads and the footpaths are dangerous. I might fall. There is usually someone around when I go to town.
A number of participants dislike going out in public due to public attitudes, where they believe people 'look at them funny' and 'talk down to them'. This perception was common to all age groups. As a result, some people don't go to pubs or shopping centres. Some participants experienced difficulties in going to the cinema or the pub at the weekend due to a number of factors including unsuitable bus times, restricted access, knowing the time, managing money, the attitudes and behaviour of other people, and having to be home at a set time for safety reasons and to keep in with staff timetables. Some of the older people have addressed some of these difficulties by employing their own Personal Assistant to accompany them. However, this option was not always available to people without financial means.
As previously mentioned, the younger participants were more computer literate than their older counterparts and they used computers routinely for looking at clips on YouTube, watching DVDs, and playing games and music. Most younger people said they send emails to their friends. They were taught to be cautious when they use the Internet, with the result that no one uses social networking sites. Some of the older participants also access the Internet but typically for entertainment sites and finding out information concerning, for example, bands and venues. While all the younger participants and some of the older participants had mobile phones, many of them found it difficult to send and receive text messages, and some disliked leaving voice messages.
Visiting the Doctor
Most participants, especially the younger group, require support from a family member or support worker when they are going to the doctor. Most of the younger participants attend the family doctor as they live at home with their parents. For the most part, it would appear that the doctors explained the procedures in ways they could understand, although some participants don't like when the doctor speaks to their parent and doesn't look at them. In the words of one participant, 'My mam does all the talking. I do some of the talking too'.
Most participants need help in cooking hot meals due to dexterity or balance problems and a reluctance on the part of their carers and parents to let them cook meals. The older participants, many of whom were in independent living tended to cook more than their younger counterparts, most of whom lived at home with their parents.
These participants lived in a variety of accommodation and circumstances, with most living at home and others living either in sheltered group homes or in some form of independent living. Those who currently live at home with their families were divided in their opinions of independent living. While some were quite happy to continue that arrangement for the foreseeable future, most of the younger adults would like to live more independent lives away from their families and staff. In all cases, participants who currently live independently were content with their lives and would not like to change.
However, it is not always easy moving into independent accommodation and one young woman had tried and failed. She would like to live in her own home but was refused social housing because her father was a farmer 'with too many acres'. However, she felt this was unfair to her. Her parents own the farm and not her.
They didn't ask me what I wanted to do. They just said, no way. I wouldn't get social housing because I am living with my parents and I am not squashed into the house. They didn't look into things properly. I would like to live in the country on my own.
A number of participants, both young and old, would not like to live with their friends because of the fighting they anticipated would happen. This latter group could not imagine living apart from their families or group home. Most of their friends live at home also and that is the way they like it. This group appeared to be quite institutionalised and over-protected by their service and families when compared to the majority of participants who were being encouraged to consider some form of independent living.
I live with my mother and my brother and that's where I want to stay.I wouldn't like to live with friends. Sometimes you might get into a fight and things would be all upset. If there was a bit of trouble in the house, you would have to move out. .... I hate fighting.... I have never lived with a friend.I am happy now I wouldn't like anything to change. Maybe a little different?I would be a little bit worried living by myself. Sometimes the 23 bus doesn't go when it should. Sometimes I am lazy. I don't do much cooking. I love to cook but when I see my mam cooking I can see it is difficult.Sometimes I need someone to help me.My dad would pay for my new house but not now. I would like to live independently but not yet.
A few individuals would like to live in their own apartment or house located close to where they currently live, with a friend or in a relationship with someone of the opposite sex. The younger participants were most shy when discussing relationships but some were quite adamant that they would like to live with a boyfriend/girlfriend. Some older participants also expressed similar sentiments.
I want to live in an apartment, maybe close to where I live now in Donabate or maybe in Lusk or Balbriggan. I would like to live with my girlfriend.I would love to live in Swords because I am a member of a gym in Swords and I go there with my mam. I would like to live with one of my friends.I want to live in Kilbarrack. My gym coach lives there. At the moment, my mom doesn't want me to live on my own, so I will stay with my mom. I don't want to leave my house. I cook as well but the cooker is very difficult to use. I can hoover and things.I would just like to have a housemate. I have three carers who come in and I do get time on my own but I would like more time on my own without staff coming and going. I feel it is not my house.At the moment I am with my mom. God forbid if anything happened to her. I wouldn't mind that. I would like to live in Navan with other girls. I am independent now, living with my mother.
Most participants acknowledged that they currently require or would require assistance from someone if they were to live independently, although, for the most part, they would not like staff to live in. They were also very conscious of the cost of purchasing a house.
You might need help doing a few jobs in the house or driving around the streets. I can cook but I would need help. I would probably have enough money.I can't walk on a road with no footpaths and I cant cross the road with no crossing. I don't do much cooking. My mam does the cooking. I don't.I would like to live with friends who are in my hostel - we could go to matches, rugby matches, listen to Morning Ireland, go to the cinema, play bingo, listen to 5 seven live in the evening, live with the lads and staff - I love where I am.It is a good idea to live with someone. I cook dinner myself. I wouldn't need help in the house but I don't do any shopping at all. I would like to have someone living in the house with me, people without disability.I wouldn't like to live in a house alone or with others.I am better off where I am now.
A number of the older participants believe there were too many policies and regulations in group homes, which restrict their freedom. Some said they were not allowed to have visitors, to eat food they like, or stay at home on their own. While they acknowledge that staff were probably concerned with their safety, they felt that they are adults and should be treated accordingly.
Some verbatim comments in relation to independent accommodation and group housing illustrate the views of participants as follows.
I share a house with B. The staff comes in the evening and they go home at night. I put on the dinner myself and put on the cooker myself. That is what it is all about, living independent, being able to do things yourself and not waiting for staff to come in. I can do most things for myself, including cooking and setting a fire. The support worker comes in to see everything is all right. She doesn't do anything, just have a cup of tea and a chat (smile). We are all right, sure. I got a cat because the dog was running out into the road and I mad about her and she is very good. She doesn't cause trouble and just sits there in the evenings. I love animals. They are great company if you are watching TV.I live out in independent living. I wash and cook myself. I don't have to wait for the staff to cook for me. I cook my own dinner and my own tea. I am able to do everything and I pay my own bills for the house. I have emergency response in case anyone comes to the door. It records to see who is outside. I am safe. I have staff up to 10 and I am on my own after that. I have 4 bedrooms, 3 showers and a bath. I live on my own. I love it.I am happy where I am in independent living. I am happy on my own. My support worker takes me into town and goes with me on holidays. I go into town on my own on Saturdays. I am allowed to do that. I am independent enough now.I live in an apartment. I know the HSE might think it is more cost-effective putting people in a house with 5 other people but in the end it isn't. People get challenging behaviour from living in crowded houses. I like living alone, it was my choice, and lots of people don't have a choice. There is not enough places for people to live alone. People should be given more choices. I would also like to see more direct funding for people living alone.
I got new house and happy living there. The house got done up and I got a grant. I am living with one more fellow and there is staff who come in and cook dinner. I cook my own dinner - meat and fish. I used to live in a house with 5 people and when we went to the shops, we all had to hop into the bus. I didn't like that. I wanted to stay and watch a football match but I had to go - 'You get on bus, you get on bus, you get on bus'.You have to come in at this time and to have a bath when I don't want a bath. I want a bath tomorrow. The same with dinner - you have fish today but I don't want fish, I want steak. They take the kettle away at night (for safety) and you can't make tea before you go to bed.... There is too much safety at times. It has gone over the top. People should be allowed to make mistakes. There is too much control. You have to give people choices and be able to make mistakes.I live with six people in a group home. That's too many but I like the house. People wanted to move me out of the house but I told them I didn't want to move. I want to stay here.I want to stay in the hostel. The staff and lads are great. We have parties and nice meals and we get chocolate, biscuits, tea and coffee, and we go to mass, to the shops, and the pictures. We have a helper to go with us.I live with 10 people - two fulltime staff. I am happy thereI live in Connemara with 4 people with disabilities and 2 staff. They cook and clean. I don't live independently. I would like more freedom. There are too many bosses, too many policies and rules.I hated going out in the bus all together. It gave us a bad name. People were looking at us in Dunne's Shopping Centre. I had to go around the shops and I hated to do that. I wanted to stay at home and not traipse around the shops.
2.5 Living Independently
Approximately half of the participants would like to live independently as they believe it would allow them greater freedom to do what they want, to go where they want (provided it is safe), and give them their own space. In order to live independently most participants felt they would require assistance with various day-to-day activities, such as shopping, cooking, cleaning, transport and budgeting. Some also mentioned the importance of having a job where they could earn money and feel independent.
Living alone can be stressful at times but nothing, it would appear, which can't be solved by a little retail therapy!
Sometimes you might get a bit upset and a bit anxious but everyone does. You don't know why you are upset or if there is something in your head and you don't remember what is in your head. If I am worried about something I would talk to staff and they would help me to see what is wrong. I go shopping for the house- I make out a shopping list so that I know what I need. I can do all that myself.
Those living independently at present said they don't have problems paying their utility bills through the local Post Office. Their lifestyle enables them to have a space of their own, where others have to knock to gain entry and where their belongings are safe and private. Some of the older people said that this had not been their experience in previous accommodation.
I would be afraid someone would take my CDs. I would be concerned if there was somebody sharing. That's why I like living on my own, I have all my own personal stuff. It is all private. You have your own TV and radio. It is all your own stuff and you wouldn't want anyone touching it if you weren't there.
A number of the younger participants expressed the wish to live independently on a number of occasions, even though they are aware of some difficulties, including opposition from their families and the need for outside support.
I would like to live alone but I am no good cooking things. When I get older I would love to live in a house with one of my friends, people without a disability. I love cooking but someone helps us in Prosper to do the cooking and my mam cooks at home. I cook something healthy and something unhealthy. I love steak and chips and pepper sauce but I couldn't cook that. My mam cooks that. I know how to make a sandwich. I need help cooking a pizza. I know how to clean the house and how to clean the kitchen but I just don't know how to cook, how to cook a fry-up on the weekend mornings. I love to go the pub with a friend.I would like to live with friends. I have a boyfriend and we could get a house and I could cook dinner and buy food.My mam would be worried about my living alone. I would love to live in a house by myself near my mam's house.Living alone would be different - you would have to cook more and put on the oven.
A few individuals recognised the need for adequate finance and an ability to manage finance if they were to live independently.
There is not enough money if you want to live on your own. The money you get now €160 will only barely do you for the week before you live on your own. You wouldn't be able to survive on that if you lived alone. Things are very expensive.If you have a bit of money, you are happy enough. If you had no money you wouldn't be too happy. I am working in Supervalu so I get money and I am quite happy with it.You have to budget for ESB, lights, food and to watch how much you are spending. I got help and it is ok..... You have to look after the house, keep good time-keeping and keep good hygiene and everything else. It is very important to have a shower and wash your hair, personal hygiene. Cook a dinner, sit down, mop floors and clean the bathroom after you. I am doing all that. The staff show me how to cook the meat. They show you how to get out of the house quickly if the smoke alarm goes off. You are not allowed smoke in the house, you have to go out. If the gas is too high when you are cooking sausages, you have to turn it down in case the smoke alarm goes off. There is a fire extinguisher in the house as well in case of fire.
Finally, when asked what supports they would need to help them live independently, the participants made the following suggestions in no particular order:
- A dishwasher
- Cooking lessons
- Help with crossing the road, checking bus timetables, shopping and going to mass or on holidays
- Someone to check on you to know you are safe but not to live in
- A housemate
- A key to their home and bedroom, where people have to knock before they enter
- Money they can spend when I want to
- Better footpaths for wheelchairs and people who are unsteady on their feet
- More staff to bring people places
- Freedom to go places alone and not in large groups
- To meet more girls/boys as friends
- Staff who are less protective and who allow you to make mistakes.
When asked what they would do with €1,000, most people would like to go on holidays, to give money to their families, buy a house, one participant with complex physical and intellectual issues said he would just like to be respected, to feel important, and to be listened to when he speaks. He does not want to be treated like a book, which is judged by its cover.
2.7 Concluding Comment
The material presented in this chapter, while somewhat repetitive, is designed to document the views and experiences of people with intellectual disabilities in as much detail as possible., thereby remaining true to the underlying spirit of the consultation process. Once prompted with the initial questions identified by the NDA, the participants effectively took control of the discussion to say what was important to them. Unsurprisingly, perhaps, they identified areas that are of importance to most people including work, relationships, accommodation, travel, socialising, using public services, and independent living. However, while they like doing many of these things, they also experience difficulties, many of which are not faced by their more able-bodied counterparts.
Most people with intellectual difficulties find routine tasks difficult and need the assistance of staff and family members. This reality is something they are aware of and which they are willing to address through training and on-going support. However, their life experiences also suggest that there are many barriers to community integration, which are ingrained in Irish society including perceived inadequate transport services, poorly maintained footpaths, the attitude of the public, and services and families that are perceived to be too protective. In the words of one participant:
The attitudes of staff and management need to change. They should not do so much for us. Take more risks with us and let us make mistakes.... Let us stay at home on our own......I find that people who live in the hostel get used to people doing things for them. Everything is done for you in the hostel. When you live by yourself you have to do it right. It is bad that everything is done - making the bed, and cooking meals - because people don't learn how to do things if they live on their own in the future. They wouldn't know how to live on their own if they wanted to'.
The lives of people with intellectual disabilities are relatively straightforward, insofar as they want and need quite simple things to improve their lives and live more independently. Some of these wants and needs outlined in this chapter include support with routine tasks that would enable them to live independently, privacy and the freedom to find their own space, facilities and utilities that are accessible, opportunities to socialise, develop friendships, and go on holidays, suitable employment and money, and opportunities to make mistakes. Above all, they would like to be treated with respect and the option of living independently as perceived by them.
For the most part, these support workers in these and the other groups sat separately from the participants and did not intervene at any stage during the group. One exception was where a participant could not communicate without the assistance of a special alphabet board, which was administered through his carer.