Members of a Speakability Group Talk About Their Group

‘Speakability’ is a national charity. They have ‘self help’ groups that meet regularly. All members have Aphasia as the result of a stroke or head injury or other neurological condition. Someone with aphasia may have problems with any one, or more, of the following: talking, listening, understanding, writing and using numbers. Aphasia can manifest itself differently and with varying degrees of severity for different people. As one of the group explained: “If you have a stroke nobody is affected the same way.” (For more information about Aphasia see: www.stroke.org.uk or www.speakability.org.uk)

Here, members talk about the group. Each "segment" of the interview contains a link to a subtitled video of the discussion (RealPlayer is needed to view these).

Chris explains how the group began [View video of how the group began]

Ian: How did Speakability start?

Chris: There was a girl…she was a what’s their name…she was a…she was a…

Ian: Speech.

Chris: She was a talking girl she was a…

Ian: Speech and language therapist.

Chris: That’s right. And it was about…before me there was about four people and her then I goed and then there was six, seven, eight and then there was ten people that had strokes and they said we’ll have a meet and decide that every four weeks. There is some people that have strokes last year and some of them ten years. Some of they’re talkings is really bad and some of them is better, but they all had this Aphasia. Some of them like me, my reading and writing has gone you see and it’s the doctors say you start from nothing, the whole thing. Some of them…some of they’re reading…some of them have got newspapers is fine and writing is fine, but some of them is no talking, nothing. There’s about two of them…there’s some of them with good and bad you see. And one of the things…a lot of them when they have their (stroke) on the right with pain you see…walking.

Ian: So the stroke was on the left part of the brain and that would mean that it would be on the right side of the body.

Chris: That’s right yeah. That’s it really.

Ian: Oh, I see I got it mixed up.

Other members talk about the importance of ‘Speakability’ meetings:

Paul: It’s easier to get along with that company . . . It’s nice and easy for people to talk because we’ve all got the same problem. We know that – we don’t feel frightened to speak to people because we’ve all got our own points – able to talk or whatever it is. We’ve got something similar to everyone else here and if people are not embarrassed to speak . . . if they just say their name that’s a start for some people. Some people can say a lot more, but some people don’t like to speak to anyone about anything so we try and encourage people to . . . We’re hoping that a little discussion here will help us to speak and to say things.

Alice: Speech problems or halting speech doesn’t matter but just two hours a month, just enjoy every day – it easy – not matter understand – I’m coming and that doesn’t matter.

The group also go on visits and outings. They experience quite a lot of problems with people not understanding them, thinking they’re drunk, or mentally ill, or “a bit thick” as one of the group puts it.

The group was recently approached by a Speech Therapist who wanted to do research about their speech and language difficulties. Being involved in the research has been of great benefit to them, not least because the Speech Therapist has become a friend to some people.

Jack talks about what being involved in the research was like for him:

Jack: She went to my house and she’s been to a lot of people’s houses to do this sort of thing. And it’s nice. It’s very nicely done and she’ll discuss things to you and she’s got a video recording everything you say and it’s nice to feel that you can do this sort of thing, no need to be aware of it, it’s pleasant and it’s so easy to deal with. She’s a nice lady. And it’s so easy to listen and to question her. At the same time, when she comes to your home, own house, you’re comfortable. And you can explain everything by that. By being in, er, by being in a room like this, you can’t explain because you’re speaking to everyone. You’re speaking to everybody then, but that’s why speaking to a tape recorder, she’s helping you at the same time.

Members of the group have found watching and re-watching the videos the Speech Therapist made of them very useful. [View video of how they found speach therapist video useful]

Ian: Yeah because we were wondering…they said these video tapes were a record for them.

Chris: That’s right, yeah.

Ian: And have you been using your video tapes.

Chris: Yeah, a couple of times yeah. Because I’ve got the video…I’ve got a copy and I really think I look at things last years and I’m better…better now. My talking better whereas last year.

Ian: You can see there’s change.

Chris: Yeah. Yeah, yeah. My whole thing is better like because I have a wife every day, but sometimes like Kirsty, I haven’t seen her in a bout four weeks and she says ‘Oh you’re better now’ every time she says ‘oh…

Ian: Because she can see you…she doesn’t see you every day she can come back and see you’ve changed.

Chris: ‘Oh, you’re better.’ That’s right. Yeah, yeah, yeah so that was good news really. But this girl at this place (speech and language therapist)…

Ian: Was it Jo did you say?

Chris: That’s right. I used to go every week I went to her house. A lot of people they have a stroke…they just go…people in their sixties…people in their house have a stroke they just go ‘well I’m gone now.’ And they don’t try.

Ian: They don’t try anything because they think they’re finished.

Chris: I know, I know. I just can’t (unclear) people really.

Ian: It’s really, really sad.

Chris: Yeah. And they never…they never nothing like if you weren’t here now I’d work another hour and a half – two hours, but other people they TV all day.

Ian: Just watching TV all day.

Chris: And they’re just the same, but me I’m really better I’m a little better.

The group was already thinking about what they would like to do to inform other people about Aphasia. One of the reasons they found working with the Speech Therapist helpful was because she encouraged them and supported them to carry out their ideas. [View video of how they are carrying out there ideas]

Ian: Flyers, things like this is a paper you’ve put together…

Chris: That’s right these things. Yeah, yeah.

Ian: And Kath said something about the group wanting to move these forward in a way, wanting to do things with them.

Chris: That’s right yeah.

Ian: What kinds of things were you thinking of…

Chris: I try to…I’m trying to a lot of time…I want to get what’s the name...people like (writes down MP)…

Ian: MP’s.

Chris: That’s right. And these (writes down councilors)…

Ian: Councilors.

Chris: That’s right. All the people with aphasia…they’ve never heard of them. They know there are strokes, but this ‘Oh, I didn’t know that.’ And this word….(MP) he was alright because he’s been to the meetings a couple of times this fella…

Ian: Oh, I see.

Chris: And I asked when he been to that place…he knew what strokes was, but aphasia, he’d never heard of before. And he said ‘I want other people to know things.’ I was on about the newspapers and things, but they’ve not cared really…there’s nothing good in reading these things.

Ian: You don’t think…the papers don’t see this as being interesting?

Chris: No, there’s nothing to do you see…It’s hard these things you see.

Ian: So how would you carry this forward? How do you think would be the best way to interest people in this?

Chris: Well I (unclear) because I got this girl…Helen got the newslady and she said ‘go along on this day’ and on the day she didn’t go.

Ian: She didn’t show up.

Chris: Yeah.

Ian: So, it’s difficult to…

Chris: There’s nothing…there’s nothing…who cares? It was like with the kids with two legs or something…that’s something in newspapers and a car with kids or something…

Ian: So if there’s an accident or something strange…

Chris: Yeah, but this…a fellow about in his sixties has a stroke…who cares?

Ian: It’s not interesting.

Chris: Yeah, that’s right, yeah.

Another member of the group is working on a leaflet for Doctors. Doctors are seen as a group of people who, generally, don’t understand the problems people with Aphasia face:

Alice: But the thing is, doctors are not, have no experience of the problems we’ve got. They know about what it’s called but when they’re coping with it like we’re coping with it they have no idea how bad a problem it is. And if they had got any idea about our problem they would not be employed any more . . . they haven’t got a grip of any idea of the problem we have. And they explain to us, how to cope, how to do this and how to do that. They only know a little amount of what they know, we know a lot more about than they do. And there’s nothing they can, they can never get a grip of it, as much as we talk about it, it can’t mean anything to those people, they mustn’t have any idea what it’s like. It’s a terrible thing.

The group face a number of challenges associated with planning and carrying out work like this, not least because of their communication difficulties. They have tried to think of ways in which each member of the group can have their say. [View video on different ways members of the group can have their say]

Ian: Because he talks so well and he’s so comfortable with talking he talks a lot…

Chris: That’s right.

Ian: He talks more than other people in the group.

Chris: That’s right, yeah.

Ian: And he tells stories, he was telling stories about things…and it’s interesting, but I was wondering if sometimes in a group like this what happens when somebody like that is very comfortable and other people are not so comfortable speaking, so maybe someone like that if he wasn’t there, maybe other people would be talking more…

Chris: That’s right yeah.

Ian: But because he’s there, other people shut up, they don’t say anything.

Chris: They don’t talking…yeah, yeah. What they do sometimes…well they have sometimes when we go to the meeting…last Christmas, last year we go ‘right what happened to you Christmas?’ and I will say ‘well we had the kid, kid…we had the two kids’ and two minutes to say ‘well I got a new thing and I got new kids and I went to football and we ate chicken and pork’ and other people…a little talk (makes circular gesture)…

Ian: Everybody gets a chance to say…

Chris: Yeah, yeah otherwise as you say there’s only one people talking.

Ian: That’s right yeah.

Chris: That’s good things.

Ian: Yeah, that’s a good thing, because part of it for us is we’re thinking about ways…because when I say ‘partnership research’ it’s not…on one level it sounds very easy…yeah great everybody gets to do research, everybody gets to do this, everybody gets say what they want to do, this is perfect. But, of course you know when it actually comes down to it, it’s not so easy and people who are used to being dominant, people who are used to doing all the talking even with the best intentions a lot of the time they’re still doing all the talking and they’re still the controlling of the research…

Chris: That’s right, yeah.

Ian: …and they’re still doing it and it’s much easier to say than to do, to try to get to have other people involved…people who aren’t used to doing all the talking, but to get them…to get they’re points across as well and it’s ways of finding strategies, techniques and ways of doing this and that’s a good one to go around and make sure that everybody in the group…

Chris: Yeah, cause you know I think if you ask (for) two minutes, that’s fine. Two minutes is a long time really.

Ian: Two minutes is a long time to speak, yeah.

Chris: Yeah. I mean a lot of people…when I was a rep, my God there was a fella sometimes in meetings people have new…a new…new…pro….(writes something down)…

Ian: New products…ah, yes.

Chris: Yeah. I mean sometime years ago, sometimes really…there’s a new milk or something and a fella and he’s got one of those things (a display) and I’d be five minutes and that’s it, but sometimes it would take half an hour and it was oh my God…

Ian: (laughs) Right.

Chris: And you didn’t want that all day. The first five minutes your ok, but twenty minutes and it’s gone.

Ian: It has to be really, really interesting to keep you paying attention after like five minutes.

Chris: That’s right.

Ian: So, just a few minutes has been enough in Speakability, in the group?

Chris: Yeah, right.

Ian: And everybody gets a few minutes and is that how it usually goes?

Chris: Yeah because we get some people sometimes and about five minutes is good, but where there two people you’re talking about twenty minutes and your (gives a look of exasperation) uhhhh (makes snoring noise)…it’s gone. But, five minutes is good news, ten minutes that’s it.

Ian: That’s enough.

Chris: Yeah, really.

Ian: You don’t want people to get bored. You want people to stay interested by limiting it to a few minutes.

Chris: Yeah. Really ten people for ten minutes just talking…one people…a lot of talking. I mean me I can talk a whole day a whole year. I was talking five minutes from now (unclear) about fifty a whole day.

Ian: Your whole life story.

Chris: That’s right.

Chris also feels that the group needs someone who will ‘push’ things forward and encourage people to make decisions. [View video on how the group works]

Ian: So, is there a way you worked in the group to kind of find a balance between these things? That is how did you work…I’m trying to understand how you worked together as a group…who makes the decision that somebody gets two minutes (to talk) or is that not a decision? How does this work?

Chris: The chairman is Michael… the big fella. Is it there? (is his name on the sheet) He is the manager one of them.

Ian: Yeah, he is the what do you call it…the uh…chair.

Chris: Yeah. He’s not a pushing…he’s not a…not a…

Ian: Pushy person.

Chris: No really, so sometimes on the day he doesn’t want to…he doesn’t want the day…he doesn’t want a chairman…

Ian: He doesn’t want to do it.

Chris: No. What I do…last year sometimes we have a…I was every time…me…

Ian: You were doing that?

Chris: Yeah. And I didn’t want that, but otherwise there was nothing to push.

Ian: Right. Ok, so that’s a good point so sometimes someone needs to be there to push things along.

Chris: Yeah and what I had to do…we had to go right next year it’s there (points to another name on the list) next year it’s them (points to another name on the list) we’ll have a...every…

Ian: So it rotates, every time it’s another person.

Chris: Yeah. But there’s one or two…she was talking and the other was alright, but the other two or three…it’s hard really you can’t push those things. You can’t push this. So it’s hard really and the other thing is everyone is bad as well, there’s only Geoff and Lesley who’s talking good really and it’s hard.

Chris: Yeah. But it’s hard things everything. If everything (everyone) were talking that was great…

Ian: But of course not everybody is.

Chris: Yeah…the whole thing is…

Ian: Everybody’s had a different experience right?

Chris: Yeah, yeah.

Ian: And everybody’s had a little bit…everybody’s stroke has been a little bit different.

Chris: Yeah, that’s right. A lot of those people, they’re reading and writing as well. There’s only about two of them who’s reading is good.

Ian: Right I see, so it’s everything for them.

Chris: So it’s hard really, yeah. But it is better. The whole thing is better. Two years three years better, but it wants people like…on that day you were there
You were talking, but sometimes there’s no speaker because there’s nothing there and on that day there’s nothing…

Ian: Going on. So, what happens in that kind of situation? What happens on that kind of day?

Chris: Well I ended up chairman.

Ian: Right so you make something happen?

Chris: Yeah so I’ll have to say ‘Yeah we’re going to have next year…in six weeks shall we go to the potters.’ We went to the potters…

Ian: Alright, I see.

Chris: A day out.

Ian: A day out, right.

Chris: And a gardens place, you know. But otherwise there’s a…if I don’t push them, it’s hard to get… to push them.

Ian: So if somebody isn’t pushing, sometimes nothing happens.

Chris: That’s right, yeah. That’s why we got him (pointing to name on the list) because he’s alright, he’s talking you see. Because his talking is good you see, Geoff, but for the others it’s hard for the other people.

Ian: But, yet sometimes they want things too.

Chris: That’s right, but some of them…other times they’ll put notes so you’ve got notes you know.

Ian: So if they have trouble speaking…

Chris: We’ll get Geoff with a note like you were talking about there…

Ian: New products.

Chris: Yeah, it’s got the wrong… the wrong…

Ian: Oh right, it may have the letters in the wrong order.

Chris: That’s right and sometimes people have trouble to say the word and ask Geoff that word and oh it’s hard you see and she’s got notes as well.

Ian: Right.

Lots of members of ‘Speakability’ would like to get more involved in doing research – “in principle” – but they also have some concerns:

Frank: I couldn’t handle it. I wouldn’t want that responsibility. You know, I don’t want that hanging over me. I like coming to the group, I want to come to the group, but I don’t want this paperwork.

Howard: Well, as a group, we’re just trying to get little bits of money, to keep us going, but it’s just a tiny bit really, to keep us going. But where we would go afterwards I don’t know. The trouble then is, we’ve got to, we’ve got to try how on earth do you do these, as a treasurer, these figures.

Paul: They’ve asked me to take over the paperwork and I don’t mind a certain amount but I don’t want to get too bogged down with it. My problem is, I’ve got to write it down, like you do, you can write it down, but I’m trying to follow the conversation here and I can’t write it . . . I can’t remember it either, that is my problem.

Alice: Try using the tape recorder.

Paul: It can become a very big problem . . .

Alice: Some people don’t want - work with us - slow in speaking.

Ralph: We can read the paper but it doesn’t go in. You can hear and you can understand but you can’t back again, you can’t say, what you want.

Nevertheless, they have lots of other ideas that they would like to explore. Although they find it helpful to be able to present a card to people which explains they have had a stroke, people’s “general understanding” of what that means is poor.

Alice: L: “Speaking up – excuse me – read that (her card) – and that’s all – A girl or a boy, um, ignorant, a stroke – but understand a woman and a man, think about it, but, um, tomorrow, me – dead – you know – but every day a bonus. Five years ago a nurse – running around – fine – but now, once a day, thank you, tomorrow might not be today.”

Another member of the group feels that Aphasia should be classified as a disability and that it is particularly difficult trying to claim benefits. He resented being “told by an expert” that he was not disabled and that he was not entitled to the benefits he was trying to claim. This was particularly difficult to challenge because of the way the system is set up and because of his Aphasia. Using the telephone is a particular challenge to many people in the group.