Listen to the experts
This toolkit is produced by the Civic Participation Network project. Our aim is to remove barriers to active citizenship for people with communication support needs. So we listened to the experts.
People with a range of communication difficulties were involved in putting the toolkit together.
Some of these individuals are quoted below. Each identifies
the practical steps you can take to make their participation
These quotes were recorded between October 2006 - May 2007 unless stated otherwise.
Sadly Alison passed away in December 2009 following surgery. She was warm, generous and full of laughter. She was a determined and powerful advocate for people with aphasia.
||Video quote (July 2009): Alison
A, who had a stroke
'And it was a big thing for us to have menus with pictures, cause we felt that when you can't speak or anything (or understanding) you need to take time. And it would help to do sentence and to get wee pictures. That was for in the hospitals'
Click for full quote from Alison A
||Video quote (July 2009): Alison
A talks about inclusive training
'The trainer that started .. came down .. she was too fast, too fast. And we have to say “No. I'm sorry. It's too fast.” And she's taught something now as well as getting us taught as well. So we had a good time.'
Click for full quote from Alison A
||Written quote (October 2009): Alison M, who had a brain injury as a child, talks about her experience in education.
'I now have a BA degree in Social Sciences from Glasgow Caledonian University. I was enabled to achieve this because I had a personalised learning support plan and access to a learning support tutor.'
Click for full quote from Alison M
||Audio quote (October 2010): Barry, who has cerebral palsy and uses augmentative and alternative communication (AAC)
'It is a lot of hard work using a communication aid to get my message across. If you see I am still busy writing on my Lightwriter it probably means that I have more to say. So please wait, as I need even more time.'
Click for full quote from Barry
||Written quote (January 2010): Bill C, who has hearing and visual impairments
'... as someone with both hearing and sight impairments my involvement can be limited by organisers not following basic good practice'
Click for full quote from Bill C
‘They’ve got this nice little sign that says yes they've got a loop system fitted. It’s never switched on. What’s the point of fitting loop systems if you don’t know how to use them?’
Click for full quote from Bill J
||Video quote (June 2009): Campbell, who has a stammer
'If I've got enough patience and decency to listen to you, especially if I didn't want to, you should do the same with me. I just think anyone should be able to say what they want.'
Click for full quote from Campbell
‘They think I don’t like going to the bar to get drinks because I’m tight. They don’t realise it’s because I fear I might stammer when asking for them.’
Click for full quote from Claire
‘We have to be patient when the assumption is made, “Can’t speak... must be deaf” or “Can’t speak... must be stupid”.’
Click for full quote from Clifford
||Written quote (September 2009): Colin, who is an adult with dyslexia
‘No two dyslexics are the same and I think it’s very important to point that out. Dyslexia affects us differently. We’re all individuals. We’ve all been affected differently, and we all struggle with it in a different way.'
Click for full quote from Colin
‘People think that I’m stupid because of the way that I talk. I’m not stupid, I’m smart.’
Click for full quote from Connor
'I think the most important thing that people understand is they need to give time for people like me to respond to their questions. And also listen to what I've got to say. It may not be very clear. And if they don't understand me please ask me to repeat myself.'
Click for further information from Dave
||Video quote (June 2009): Helen, who has had a stroke
'I really enjoy using trains, but it's not easy. I think if people know that you have a wheelchair and you know.. that seems to be OK. But having communication problems is very hard.'
'Well I think they should ask us to speak. Not themselves all the time. So it's little things like that. Ask us to speak for ourselves and help us to do it'
Click for full quote from Helen
‘I need plenty of reminders, but don’t come and cut my sandwiches or dress me.’
Click for full quote from James
||Written quote: Kenny,
who is an AAC (Alternative and Augmentative Communication) user
'I don't want to be patronised just because I have a
communication board. It doesn't mean I'm stupid.'
Click for full quote from Kenny
‘If you just give notes out at a meeting, it’s a nightmare trying to read them and work out what you're supposed to be doing and saying. It would be helpful if there was something sent out to you beforehand.’
Click for full quote from Lindsay
‘As far as communication goes, keeping things simple, focusing and keeping to a routine really helps. I can function on quite a high level if I stick to these three principles. Keep it simple so that it’s understandable really to everybody.’
Click for full quote from Lynda
‘Before coming to a meeting I need information in advance. Then I can prepare what I want to say on the Lightwriter. It’s a machine which I can make speak for me.'
Click for full quote from Nigel
Pat and Margaret
‘Well the brain’s not affected and there still is a person behind the apparent mask and you need patience and understanding to find out what it is they want to say and what they are feeling.’
‘We can’t talk up in a meeting very easily and it might look as though we don’t care as much as people who do make more of a fuss. We really do feel we want to say something but we can’t get it out loud and clear sometimes. It’s only our motor movements which are impaired, not our thinking.’
Click for full quote from Pat and Margaret
‘Ask me to repeat it and just don’t go ahead and say "yes". Because if they say they understand and they don’t, I can tell when they don’t understand me. Just don’t ignore me. Just keep listening. It is much appreciated. My speech is alright if I take my time.’
Click for full quote from Robert
‘I learned myself to adapt to this phrase by which the group adapt – we’re living with dementia and not dying from it - and that meant a great deal to me. Everybody has got to remember that dementia, everybody is no the same. Everybody is an individual and they’ve got to be treated and respected as an individual.'
Click for full quote from Ross
‘As I look OK the difficulties can be unseen. My cognitive difficulty affects my speed of comprehension and difficulty with word finding. My difficulties can impact on me more than my mobility difficulties.'
Click for full quote from Sheila
‘Mind mapping allows me to cope with the many difficulties I have with communication and memory and allows me to be better prepared for meetings at whatever level.’
Click for full quote from Sheila talking about mind mapping
Thomas (T J)
‘Stop using jargonised words in the meeting so people with learning disabilities could understand what they’re saying.‘
Click for full quote from Thomas