Chapter Four - The views and experiences of self-advocates
One group comprised a number of young adults in their 20s who have received training in self-advocacy. Each of the participants are currently receiving supports from a service provider. Two of the four participants had profound speech difficulties, resulting in fewer words but nonetheless strong sentiments being expressed. Their views are summarised in this chapter under the following headings:
- Activities participants like to do
- Difficulties experienced by the participants
- Activities participants would like to do
- Independent living
4.2 Activities participants like to do
The participants said they like the activities they do in their service, such as literacy, numeracy, computers, home management/cooking, personal development, community placement, drama and going on work experience. They like these activities because they do them with their friends in a safe and familiar environment. They also like watching TV and surfing the web, going out to coffee shops, writing, listening to music and watching sport.
Unlike the men who don't like shopping for clothes, the women enjoy shopping for clothes and meeting their friends in the day centre. Both of them usually shop with a family member to help them select clothes that suit them and to take care of the money.
My sister goes with me. I pick what I want but my sister does as well. The clothes I would like, she might think they mightn't suit me. So she comes with me and picks out my clothes. I go home with clothes I like once they fit me but I would need to have someone with me to pick out right sizes. I am not trusted with money because I am very bad with money, a no-go in that area to be honest..... I buy my own clothes but I go with my sister who doesn't agree with me. There would be holy war in the shopping centre and sometimes I wouldn't agree with her but for the sake of silence and peace I give in so that everyone is not looking.
4.3 Difficulties experienced by participants
Each of the participants had experienced difficulties that were directly related to their disabilities. Some have mobility problems and consequently experience difficulties walking on footpaths that are poorly maintained and also when taking buses. Those in wheelchairs are dependent on accessible transport or their own power to get around. Everyone found it difficult to see bus numbers and to get on and off buses.
They also had difficulties socialising, due in part to the mens' very poor verbal skills and the profound nature of their disabilities, which makes movement difficult. One person uses a computer to communicate with people while the other needs a Personal Assistant or family member to interpret his words and gestures. Both need someone with them at all times to help them wash, dress, shop, eat and so forth. However, while they acknowledge they need assistance, both men felt that socialising with their peers is made more difficult by the fact that they always have someone with them. None of the participants are not allowed to go into town on their own.
4.4 Activities participants would like to do
Socialising with people their own age
Each of the participants would like to socialise with people their own age and to do things that 'normal people do' and without people 'looking at you'. However, the reality is that they have few opportunities to socialise because of their need to have someone with them at all times due to their problems with mobility, communication and in accessing some buildings.
No one makes plans to go out at weekend - they mostly stay in their own homes. They have nobody to bring them to meet each other or friends from the service. It is boring and frustrating, especially when you are on a summer break for two weeks. It gets really boring because you have your Personal Assistant for only one day a week, that's all. Manpower is a big thing, to have someone with you and bring you places.
The men would definitely like to meet women their own age but would not disclose the nature of the activities they had in mind! They would also like to go to sporting events with other guys or, in the case of one of them, to go to a play.
The women expressed a strong interest in meeting other women to 'go shopping, go to cinema, go out to lunch, meet up at night time if that is possible, hang out and have fun, chat, and do make-up'. They generally don't meet anyone their own age outside the day centre. When asked what is preventing them meeting more people now, one participant said she was not allowed out on her own in case anything happened to her.
We are not allowed, you need someone out on our own, and we need someone with us at all times in case we fall but anybody could fall. I am not allowed out on my own, to meet up with my friends or go to town. I want more freedom to meet up with my friends in town or to meet Marian to go to the cinema and just do what other young people would do. To make it happen, I would need to say it first of all to my mam and dad. I am not allowed out without them knowing who I am with, where I am going, what I am doing, and what time I will be back. In the service I always have a staff member with me. I would like more freedom on my own. I would really like to go into town on my own. That would give me more independence. I would love more of that.
The other woman agreed with these sentiments and said her situation was very similar.
No-one would allow you to go on your own. I think when you have a disability people think you can do nothing. People don't understand what we need.
Both women would like to go to an agreed location that was safe and interesting, such as a shopping centre, with a staff member, who would then leave them alone for an agreed period of time and arrange to meet them later. However, they have never asked for this to happen because they feel such a request would be rejected. The girls also expressed an interest in going to a gym 'just to see what it is like'. This would allow them to get fit and possibly some talent spotting also! However, while each of the participants would like to have a boyfriend or girlfriend, the two girls were of the opinion that this would never happen for them because of their disability.
For me personally, the disability would come into it. I am sorry and I don't mean to bring my disability into everything. I would say it is something I won't be able to change. It will stay with me forever. I don't think I will ever get married or have kids. I would like a boyfriend.... I do want one but I think the disability will hold me back. I don't think boys look at people with disabilities and your parents hold you back from meeting people.
Another factor that inhibits their social lives is their belief that people would look at them as if they were strange. Unsurprisingly, none of these participants like being stared at.
I have had people come up to me and stare at me and ask me what I need the stick for. I have explained all that to them. I am not ashamed of my disability now. I was but not anymore. I don't care what people think of me. That doesn't mean that I won't explain to people about my disability if they ask me because I will but I don't like people staring at me and asking me what I need the stick for in a not-nice way. Small kids do that to me as well but I don't mind them....They treat us like kids basically. Mothers and fathers tell their children not to stare. That makes me feel I have a disability.
When asked what, if anything, would help them to meet more people their own age, one of the men said he would like more Personal Assistant hours, as he would need a Personal Assistant to help him drink coffee or eat if he went out to a café. He would also need the assistance of a Personal Assistant for an extended period of time to travel to see shows. His current allocation of hours does not allow for this as often as he would like. Although he is confined to a wheelchair and has very poor verbal skills, he has already travelled to a number of foreign countries.
One girl said she would love to go to Dublin for a day but that her Personal Assistant wouldn't agree to it because she didn't have enough hours.
I would love to have a Personal Assistant to - this might sound selfish - to take me places I want to go, if that is ok with them e.g., town, Mahon Point, the cinema, those kind of places.
Another girl said she would like to go on holidays with a Personal Assistant and without her family.
Everyone would like to work in a normal job and some had ideas for starting their own business. One young woman would like to open a 'Doggy Crèche' but when she told people about the idea, they thought she was 'off her rocker!' She was also told she would have to go to college and to get work experience and money, all of which would be problematic for her.
I do want to open up a business of my own, something for dogs. Keep dogs safe, like a baby-sitting service where you can drop your dog in at 9 near where you are working and pick them up at 5 when you are going home (Doggy Crèche).
Another woman would like to work as a receptionist or to work with children. One problem is that she would need to get a qualification and she can't lift children.
I would love to work. Two things. One is a receptionist in a good working atmosphere with lots of people where I could get to know people and they are not all quiet. I hate all that silence and stuff. The other idea is working with kids. The downside is that I cant lift kids or stand around with them. You would need Fetac Level 5 to work with kids and that is a no-go for me. I can hold babies but I can't hold them and walk around. I have completed a few things in Fetac. I told a couple of people what I want to do and they said that Fetac Level 5 would be very hard for me to do as there is a lot of lifting and bending. First Aid would come into it and that is not possible for me. But I would like to work in an office and meet people coming in and out in reception. They told me I would be well suited for that.
Neither woman would mind working in a place where they were the only person with a disability. However, they did foresee problems with their parents who, they believed would be 'afraid' of what might happen. They would 'want to mind me' and ask a lot of questions about the work. One girl felt she would like to work even if her parents disagreed, as she felt that they 'were holding me back because they want to protect me'. The staff are also perceived to be overly protective at times.
One of the men would like to work as a mechanic or something with cars but he knew that his poor coordination and verbal skills would make this difficult. The other man would like to become a playwright. The primary reason cited by all four people for wanting to work is to earn money and respect, to show people that they are not just people with a disability and that they are normal people doing normal work.
Both of the women and one of the men would like to cook more than they do at present. They are able to prepare snacks and light meals but they are not trusted to cook hot meals in case they hurt themselves or burnt the house down!
I would like to learning how to cook. If you knew how and if people trusted you, you could cook at home. My parents don't really trust me. I like to make scrambled eggs and tea but never dinner. I would like to do Spaghetti Bolognaise. Even if I told them I had learnt how to cook in the centre, they wouldn't let me cook at home.... The only thing I can cook at home is toast, cup of tea, beans on toast, and probably an omelette but one of my older sisters would need to be there. My parents would not let me next to near a cooker or deep-fat fryer because they would think I would burn the house down. I would like to give it a go.
4.5 Independent Living
They would all like to live independently, either on their own or with another person, and their housemate need not have a disability. If given a choice as to the type of accommodation they would prefer, the participants were open to living in an apartment or a house. They felt that they would all need support if they lived independently, partly to help them with physical tasks and partly for companionship.
Someone to come in and help with cooking and lifting heavy stuff. I can't lift heavy pot of boiled potatoes. I would need help with other stuff as well. I am independent but only to a certain point. I would not need anyone living in fulltime.I would like other people with me because if you are living on your own you might get down or depressed. Someone with you - could have fun and chat.We are independent up to a certain point and we cant do everything on our own and that is where we would need to call someone for help but good idea.
They realise that part of living independently is making mistakes and they would like to be trusted enough to make mistakes.
4.6 Concluding Comment
The four young adults that participated in this group of self-advocates were very clear in their wish to live a more independent life, which would comprise more socialising with people of their own age, opportunities to meet friends without the supervision of staff or family members, the option of working in a job that they liked and which would allow them earn money and respect, help with routine tasks such as cooking, more Personal Assistant hours, opportunities to travel, and live apart from their families. They recognise that this choice will entail difficulties and that they will need support. However, similar to the other groups, they would like the opportunity to make mistakes if that meant staff and family members trusted them.