Tag Archives: communication aids

It took me 30 years to make myself heard – World Voice Day

For World Voice Day we’re reposting this guest blog by Mandy, from Hereford. For the first 30 years of Mandy’s life, staff caring for her thought she had no awareness of the outside world. When someone finally realised how much she understood, they helped her get a communication device and Mandy was finally able make her voice heard. 

I was born in Warwickshire in 1965. I have cerebral palsy and use a motorised wheelchair, as well as a communication device which I operate with the back of my hand.

I did not get this device until I was 30 years old. Until then, I had no way of communicating except with my eyes and facial expressions.

Mandy at home, with photos of friends and family on the wall behind her
Mandy at home, with photos of friends and family on the wall behind her

Decisions made for me

I went to boarding school and then to a residential college in Devon. This would not have been my first choice, but the decision was made by the teachers from the school. I would much rather have lived closer to my family, but I was not given this option.

Then I moved into a residential home in Essex, 150 miles from home. It was a big home with 30 people in it, and only five support workers.

I used to get very angry and frustrated, because no one ever asked me what I wanted.

The staff and other professionals did not realise how much I understood, so they did not spend any time with me and I was often not allowed to make my own decisions.

It left me wondering – why? I could see other people making their own decisions. Yet I could not, just because people didn’t take the time to get to know me and understand my needs and wishes.

Finally getting a voice

In the late 1980s I moved to Hereford to live in a shared house run by Scope. I had my own room, but shared the house with a number of other people whom I had not chosen to live with.

A support worker noticed how much I understood, and helped me get a communication device. I mastered its use quite quickly, and could communicate properly for what felt like the first time.

This is where I began to feel a turning point in my life. Imagine what it was like – having a voice after all those years.

I contacted social workers, and with the help of my family and key worker, I started to make my case for living in my own home.

I had to work very hard at making people realise that it would be possible – that I would be able to cope with a more independent lifestyle where I could be in charge of my own life.

Mandy in her garden in Hereford
Mandy in her garden in Hereford

My own home

I got involved with Hereford Services for Independent Living (SIL). With their help and that of my social worker, Maggie, I claimed the allowances I needed to help pay for rent and 24-hour care.

I was very fortunate to get a fully accessible bungalow, and in August 2001, I moved into my own home. Now I really began to feel my confidence grow, and I gained more strength to make my own decisions and speak out. I built up a team of personal assistants by advertising, recruiting and interviewing. SIL supports me to arrange my finances as an employer and helps me sort out relief cover.

My support workers work a 24-hour shift, sleeping in my spare room overnight. This means I can organise my day however I choose without having to work around shift changeovers.

I recently completed a college course, and have also taken a creative writing class and written poetry. I have an active social life and often visit friends.

At this stage of my life, I feel more confident, decisive and stronger than I ever have before.

Disability Innovation: A brief history of my Communication Aids

Disability Innovations is a blog series that gathers some of the most interesting new products and services that aim to make disabled people’s lives easier. We are having a tech fortnight to focus on technology and hope it will inspire more innovation in the disability field. In this post we hear from Simon, and his journey to the right communication aid. You can ask Simon questions about technology on our online community.

 Since I was eight years old, I have used online keyboards with a chin or head switch and operated various on screen keyboards.

When I was about ten, I had a BBC computer with a program called Beeblink. In those days, there was no word prediction as we know it. This program had a word bank. How it worked was if I wanted a word beginning with ‘E’, I would select the letter ‘E’ and go into the word bank with words beginning with that letter. Then hope the word I wanted was there for me to select. This was long winded because of how it worked.

The advent of the personal computer came and so did on screen keyboards. Word prediction was introduced as well which made typing much quicker.

Windows, on screen keyboards and word prediction

The Windows operating system came along and on screen keyboards evolved. For many years, I used a piece of software called EZ Keys. This was a really good package as it gave me full control of the computer using a head switch. It had word prediction and I could set up my own abbreviations as well. For example, if I typed ASAP, it would type “as soon as possible”. EZ Keys also had a facility for me to use the mouse which was really useful and this software package was also on my communication aid.

When I obtained my first communication aid, it was really amazing because I could drive up to people and have a chat. This was before Windows so it looked basic compared to the communication systems today. It gave me a huge sense of independence as I was in total control of who I chose to talk to. Since Windows has been developed, I have had a number of communication aids with EZ Keys on and they were great because they were like mini computers. This meant I could also do my college work on them, which gave me a lot more flexibility as to how I could conduct my affairs.

About eight years ago, I wanted to try something different so I obtained a Lightwriter, operated by a head switch. It was nice and small but I did not like how it scanned. For example, it had a ‘QWERTY’ keyboard and if I wanted a letter at the end of the row, it took ages to scan to it. However with EZ Keys, the rows were shorter which meant it took less time to get to the desired letters.

Finding EyeGaze

Four years ago, I was getting fed up with my typing speed because I was typing about two words a minute, so I contacted someone I know who works in Augmented and Alternative Communication (AAC). He told me that he was working for a company called Tobii who makes communication aids which operate with eye gaze software. I had previously had trials with eye gaze technology but he advised me that it had changed since then and that this system accommodated movement of the head. I instantly said I would like to have a go and I had a two week trial of it and I found I was typing quicker. At the end of the trial, I did not want to let it go back.

I definitely wanted one so I approached a charity for some funding and within about a year, I received a Tobii and I was really happy. Tobii has a piece of software called Communicator which has facilities such as mobile phone, email and writing documents; each of these functions has a different page set. A page set consists of pages with buttons on. For instance, a page set for email would have buttons such as “compose email”, “select receiver” and “send email”. I can customise those buttons and where they are on the screen to suit my needs and way of working.

Having Tobii has changed my life because I can talk to whoever I want to and they do not need to have knowledge about how to use my communication aid. Since I have had my Tobii, I find it much easier to conduct my life. Tobii also allows me to text people as well which is great because I can keep in touch with friends and family easily.

The Communicator software is a very adaptable package. People at all levels can use it. People can create vocabulary page sets with symbols on and even whole phrases on. People can be really creative with it.

In conclusion, I have been lucky to have been born at the right time to take advantage of technology – I could not live without it.

Talk to Simon on our online community.

This blog is for information only. Scope does not endorse this product or service. We try to make sure our information is up to date and accurate at the time of publishing.

I use a communication aid to help me speak – #100days100stories

Maria is 10, and has cerebral palsy. She uses an eye-gaze communication aid and attends a mainstream school. She’s shared her story as part of our 100 days, 100 stories campaign

Hi! My name is Maria and I am 10 years old. I live with my mum, dad, sister Sophie and brother Harry in North London. I have three cats called Elsa, Tara and Stevie.

Maria with her cat on her lap, sitting next to her mumI have cerebral palsy. I was very ill as a baby and I had to stay in hospital for a few weeks. The illness damaged bits of my brain that control how my body moves. I find it very difficult to move my arms and legs how I want to. This means I can’t walk or use my hands or talk with my mouth.

I use a communication aid called a Mobi 2 to help me speak. It has picture and word symbols on it which speak when I look at them long enough. This is called eye gazing and I have managed to speed up a lot this year. I like using my Mobi 2 because it’s fun! I would like people to know more about my communication aid. I use it to do my homework and play games, I can also watch DVD’s on it, my favourite is Mr Bean!

I work with a speech and language therapist called Judy. She has taught me how to use my Mobi 2. We have worked together for five years, I even named my hamster after her! When I first got my aid I had 16 symbols on each page, I now have 144!

Maria and her mum looking at their iPad togetherUsing my communication aid is hard work and can make me feel very tired so sometimes I just eye point to the things I want. I have carers who look after me at home, Judy has shown them all how to use the Mobi 2 so they can support me. Every Monday I use my aid to tell my carers how to cook my favourite meals. The recipes are all on there. I love macaroni cheese, pizza and chocolate cheesecake! I want to put some of my grandma’s Cypriot recipes on there too. Sometimes the word I need is not on the aid and I have to ask someone to programme it in, or I have to spell it. My spelling isn’t the best but it is getting better. I enjoy spelling but it takes longer.

I go to a mainstream primary school. I am in year six. I am moving to a mainstream high school in September. I’m excited about the move. I love the new uniform, it’s all green! Some of my friends are going too. The school is really big so I will need to practice my wheelchair driving skills to be able to get around it.

Maria laughing with her mumI can email and text my friends using the aid. I also text Judy every week to tell her what kind of cake I want her to make and bring to our sessions! Chocolate is best. I sometimes text my mum when I’m supposed to be working at school. Don’t tell anyone!

I have a friend who also uses a Mobi 2 to speak. We meet up for play dates and talk to each other using our aids. We both love One Direction! I really like being able to speak to other children using communication aids because I am the only one at my school. I would love a pen pal so I could email them about my life and they could reply. Maybe Scope can help me find one?!

Do you know any children using a communication aid who would like to chat with Maria? Or would your child like to share their story with us? Let us know in the comments below.

Find out more about 100 days, 100 stories, and read the rest of the stories so far.