Cerebral Palsy

Day to day life using AAC

In my last blog I talked about my own and other people’s experiences of getting AAC equipment and support. In this blog, I am going to talk about my day to day life of being a AAC user and people’s experiences of day to day life of a AAC user. 

As AAC user I feel that there isn’t enough awareness of AAC in the public eye.  And also I have a lot of people asking me about my AAC device and what I can do with my device. So from writing this blog I hope that I can make more awareness of AAC and give an insight of my and other people’s life of being an AAC user. 

As an AAC user I find most people is fine talking to me, like talking me as a normal person and give me time to speak, really understand me and just talk to me. I guess this makes me feel good because I like to know that I can talk away to people especially strangers.  But on the other hand there are people who  doesn’t talk to me  or don’t give me time to talk because I use a talker and this makes me sad. But I know this is because of lack of awareness of AAC. 

Like with everything, being an AAC user has its barriers - here are some of them:

  • Like I said before that some people don’t want to talk to me or don’t give me time to talk
  • My talker is a computer so sometimes it breaks down, so this is really difficult especially when I am without a voice for a number of days
  • Sometimes I have something in my head that I want to say but I don’t know how to say it on my device because the word isn’t on my device, but I am quite good at describing things 

 

So being an AAC user does have a few barriers but I work around them. But being an AAC user has its benefits too, quite a lot really.  For a start my talker gives me a voice and it has opened up so many opportunities for me.  Even although my AAC device gives a voice to communicate to the world it also is my hands too for example I can’t use a computer or a phone and work the television but my talker lets me do these things. My talker is a computer, so I can access the internet through my talker and I can link my device to a computer using a cable. I use computer access pages on my device for mouse movements and other computer controls so this allows me to have a job.  

From a young age I always wanted to fight for disabled people’s rights so my talker lets me campaign about things. So even although I have cerebral palsy and find it hard to do things for myself, my talker lets me to do a bit more for myself. I would say my talker isn’t just my voice, it is really my lifeline and without it I wouldn’t be where I am today. 

So that is my day to day life experiences of an AAC user and now let us see what it is like to be an AAC user from a few different people.

 

Marion Burns

Marion uses an AAC device called Mobi2. Marion says that the Mobi has made life much better for herself not just because she can speak out, the Mobi also allows her to text which “it is great for me” Marion adds. 

Marion thinks that there is enough awareness of AAC but she adds “often feel like you are on your own with your machine” 

Marion is very comfortable speaking to people with her AAC device and says “I find everyone very good and speak to me normally - ok you have some who don’t know how to talk to you very well but just take the time. I have had a doctor who didn’t give me the time to speak.” 

But there is barriers which Marion explains, “Sometimes it can be annoying if the conversation moves on and you are still trying to get your point across. I feel that people lose interest very quickly.” 

If Marionwould give someone a guide to how to talk to a person who uses a device, she would say, “You must have patience to talk with someone with AAC equipment - they are often slow because of their disability, but they will always get their message across.”

 

Gavin Drysdale

Gavin has recently started using Grid 3 on a mini iPad. Previously, he used ovaChat8 software on a Samsung tablet. 

Gavin’s device has helped him so much. He says, “I have been using a communication device for as long as I can remember. I couldn't imagine my life without it. Often it’s my only means of communication as very few people know Makaton sign language”

 Gavin feels that there is enough awareness of AAC but he adds, “I feel there is always more awareness that can be raised. Experience plays a big part in it. If you have met someone who uses an AAC and had a conversation with them, you are likely to be more aware than someone who hasn’t. It’s just about making people aware of AAC as much as possible. Blogs like this can really help.” 

Gavin feels that people are good at talking by giving him time to answer, but he says, “It is always nervous using my communication device for the first time with people who I haven’t had a conversation with before. You don’t know how they’ll react but most of the time it goes well. The first conversation is always the hardest.” 

If Gavin had to give a guide to someone on how to communicate with someone who uses AAC, he would say “Speak to an AAC user how you would speak to everybody else. That’s the best advice I can give.”

 

Bernie Hunter

Bernie uses a Samsung tablet with 'Nova Chat' programme. It is a touch screen so she use her hands to operate the device. 

Bernie’s device has made a big difference to her life - she noticed that when she took a break  from her AAC device for a while.  Her device gives her a voice and also it has helped her to take a part in the programme Still Game. 

Bernie’s thoughts are mixed on whether or not if there is enough awareness of AAC. Bernie adds, “It depends on the environment that you're in. If it's somewhere like Bobath then it's fine but if you’re talking about everyday life then no, I don't think there is enough AAC awareness. I'm saying this because I have experienced people coming up and telling me how lucky I am to have an iPad fitted on my wheelchair as I can watch videos and play games on the go. People don't realise that the device is my way of communicating, then when I point this out to them they can't believe it.” 

Bernie feels that people are OK talking to her, but she adds “Generally people are okay with me, yeah I do get people speaking slowly to me as they think that I can't understand what they are saying to me. A lot of times people will speak to whoever is with me (Support Assistant) instead of talking to me directly, this really gets to me.” 

Bernie used to be shy talking to people using her device but she says is fine now. 

There are some barriers for Bernie using her device. She says, “Using my device in a more effective way, as I said in a previous blog I didn't get any training on how to use my device so I'm very slow at using it to communicate, I find I'm using the keyboard more than the actual vocabulary programme which isn't ideal.” 

If Bernie would give someone a guide on how to communicate with somebody who uses AAC, she would say “Don't butt in when the AAC user is talking, don't finish sentences for them and don't take over if you’re supporting someone who uses AAC, they are quite capable of communicating independently - I come across these issues regularly and it's really annoying.” 

From my own experiences and Marion, Gavin and Bernie’s experiences, it shows that AAC does make life much better and opens up many opportunities for people who require AAC. But there are barriers using AAC, like not having the right equipment and also people sometimes not knowing how to talk to an AAC user. This is down of lack of awareness of AAC. Communication is key to everything and everyone has the right to speak, so having some more awareness of AAC will make life better for everyone.  So, for the future I hope there will be more awareness of AAC.