Molly, 13, and her Dad tell Radio Foyle listeners about the challenges and 'gifts' of growing up profoundly deaf

Sometimes people think that deaf people and disabled people can’t do anything but they can, obviously...
— Molly Bradley, 13

Molly Bradley, who was born profoundly deaf, and her Dad chat to Mark Patterson on Radio Foyle in a heart-warming interview about growing up with a communication disability.

"Being able to communicate...saved my life" - stroke survivor Clodagh Dunlop speaks of her journey to recovery

Clodagh Dunlop gave a powerful and moving speech at the launch of the anniversary exhibition of My Journey My Voice on 5 October - which you can read below. Clodagh recounts the harrowing days after her stroke when she was locked in and unable to communicate with family or medical staff and how, with help of her speech and language therapist, she found her voice again.

 

By Clodagh Dunlop

"Before April 2015, I understood the importance of communication. I had to effectively communicate as part of my job role, but as a stereotypical woman, I just liked to talk.

On the 6 April 2015 my world as I knew it was blown apart, a blood clot released into my brainstem causing a major stroke and leaving me with locked in syndrome. 

Locked in syndrome left me completely paralysed. Every muscle in my body stopped working. I couldn't talk, I couldn't make a sound. I couldn't move my head,my arms, my legs. One thing moved, my eyelids. 

For the first two and a half weeks after my stroke my only means of communicating was by blinking. I had a system of blinks. One blink for yes, two blinks for no, three blinks for I love you and four blinks for you're a moron. 

Take a moment to think, if all you could say was yes, no, I love you and you're a moron, how much you'd want to say in a day that would go unsaid. Now imagine that you have just woken in an intensive care ward, you are in pain, you are hot, your family are crying at your bedside. You would definitely have a lot that needed to be said.

That was me, it was terrifying, I felt more vulnerable than I'd ever thought possible to feel. My face wouldn't move, I had no facial expressions, no smile or frown, no grimace or raised eyebrow, no sound at all.

I could hear and see everything, but I was at the mercy of those around me. I looked lifeless. Many people didn't speak or just didn't ask closed questions or the right questions. Tears would fall from my eyes, my face didn't move, I made no sound, I couldn't wipe my tears. People would ask what is wrong? Imagine yourself unable to move any part of your body, or make a sound, how do you answer the question, "what's wrong?" 

Imagine nights when you can't call for help if you need it. You are placed in a bed knowing that the position you are placed in, you will remain in for hours. You can't move your position, you can't communicate that your nightdress is twisted or it's uncomfortable. You can't say "put back the fan you switched off, I'm much too hot, don't cover me with bed sheets".

Worse still you see the elderly patient opposite in distress, you want to call for help, but have to just watch, inside your head you are screaming at the top of your voice, "help, someone". You will your body to move but nothing moves, you watch until the machines monitoring the stats start beeping, you watch as medical staff run in and close the curtains, you listen as they fight to save him but then you listen and realise the battle is lost. The elderly patient had died. 

The elderly patient is removed from the ward, medical staff leave and glance over as they pass, in my head I'm screaming louder than I have ever screamed but all anyone can see is my peaceful body, lying in bed. I had lay, watched someone in distress, I watched as I knew they were going to die. I couldn't summon help, it goes against everything I am as a person not too help and as a police officer, I've taken an oath to protect and preserve life.

To not be able to communicate is the most terrifying thing I have ever experienced. 

My life changed after two and a half weeks when I was visited by a speech and language therapist. She assessed my condition and issued me with an electronic eye gaze spell board. Suddenly I could communicate by spelling out everything I was thinking, I could communicate with my family, friends, medical staff. I took control of my environment by getting my partner to make signs to spell out my likes and dislikes. I could finally sleep at night in peace, I could indicate to leave my fan turned on, spell out if I was uncomfortable.

Being able to communicate I believe saved my life. 

Meeting my therapist that day was the start of a journey with speech and language therapy. I'd always pictured speech and language therapists just helping children with speech difficulties, now I know they do so much more. They helped me to retrain my swallow so I could eat, they spent hours with me every week doing exercises to strengthen my voice box and mouth muscles. Each one treating me as a person, an individual, each one showing me patience. Each one listening to what I was spelling out and what I would attempt to say just as if I had spoken the words clearly from my mouth.

However as I battled to talk again, I was soon to realise not everyone treats you as a person when you have a speech problem, what you say is not listened too, people can treat you as though you have lower intelligence. 

This exhibition I think is powerful, Alison and the Royal College of Speech and Language Therapists have allowed my fellow participants and I to share a journey, highlighting the different communication difficulties. I hope the exhibition changes people's opinions of those with communication difficulties. It highlights that we are all individuals, as we don't communicate in what is considered a normal way, what we have to communicate should be listened to just the same. 

Alison, on hearing my story, felt it was powerful enough to share with the Northern Ireland Executive. Despite my communication difficulties Alison let me accompany her to an ad-hoc committee meeting discussing the Mental Capacity Bill. By sharing my story, we made a change to the Mental Capacity Bill in raising the importance of communication and early patient assessment by speech and language therapists.

I am very proud to have participated in the exhibition and I now think speech and language therapists are incredibly special people who I have a new found respect for.

Clodagh Dunlop, 15 October 2016 

Deputy First Minister "proud to support" people with communication disabilities at My Journey My Voice anniversary exhibition

Deputy First Minister Martin McGuinness launched the anniversary exhibition of My Journey My Voice at the Millennium Forum, Derry-Londonderry on 5 October and spoke passionately about the need to support individuals living with a communication disability. The Minister spent time meeting several of our participants who attended the event - Ryan, Molly, Clodagh, Christine and Neill - and warmly supported them as they spoke about their experiences of living with a communication disability. 

Deputy First Minister recounts his own experiences with family and friends who have experienced communication difficulties in his opening speech at the Millennium Forum. 

Deputy First Minister recounts his own experiences with family and friends who have experienced communication difficulties in his opening speech at the Millennium Forum. 

Molly chats to Martin McGuinness about her experience of taking part in My Journey My Voice.

Molly chats to Martin McGuinness about her experience of taking part in My Journey My Voice.

The Deputy First Minister was joined at our anniversary event by the Mayor of Derry City and Strabane District Council, Alderman Hilary McClintock, and local MLA Gary Middleton. We were also delighted that our partners Kevin Doherty, CEO, Disability Action and representatives from the Health and Social Care Board were also able to join us to mark a fantastic first year for My Journey My Voice.

Guests were able to experience the full exhibition and hear moving speeches by Clodagh Dunlop, Neill Birnie and Christine Birney about the ways in which their communication disabilities have impacted their lives. In his closing remarks the Deputy First Minister said: 

I congratulate the people involved and the organisers of this exhibition who are celebrating one year on the road by coming to the Millennium Forum in Derry. Having walked around the innovative and moving exhibition you can’t help but be gripped by the personal stories and journeys all the participants have been on. By raising awareness, ‘My Journey My Voice’ ensures people with a communication disability have a very personal and powerful way of raising awareness of the nature and impact of communication disabilities.

My Journey My Voice can be viewed by the public at the Millennium Forum until 27 October 2016. 

My Journey My Voice participants and partners win national Giving Voice Award

We are delighted that the nine My Journey My Voice participants have been presented with a joint Giving Voice Award alongside exhibition partners Disability Action, and the Northern Ireland Health and Social Care Board. Christine Birney attended the awards ceremony in London to accept the award on behalf of all the participants. 

Pictured centre - Christine Birney at the Giving Voice awards ceremony in London with her guests, Sharon McEvoy (L) and Kay Johnston (R).  

Pictured centre - Christine Birney at the Giving Voice awards ceremony in London with her guests, Sharon McEvoy (L) and Kay Johnston (R).  

The prestigious award, from the Royal College of Speech and Language Therapists (RCSLT), recognises the group’s substantial efforts in raising awareness of people’s communication difficulties and the life-transforming and cost-saving impact that speech and language therapy has on the lives of many.

RCSLT CEO, Kamini Gadhok MBE, said: “Without these individuals and the considerable support and funding we’ve received from partner organisations, the My Journey My Voice exhibition may not have captured the public’s attention in the way that it has. They’ve changed people’s perceptions and influenced the media, legislation, policy and attitudes towards people with communication difficulties, which is why we’re delighted to recognise their collective achievements with a Giving Voice Award.”

Exhibition participant, Christine Birney, who spoke at the ceremony, said: “I’m proud to have been a part of this amazing project and delighted to have received a joint Giving Voice Award. Taking part in this exhibition has changed my life for the better and my confidence has grown so much because of it.” 

Fellow participant, Clodagh Dunlop, added: “It has been a tremendous privilege to take part in this exhibition and help highlight the issues around communication and to show that there are many ways of communicating – not just through the spoken word. I am delighted to have received a joint Giving Voice Award.”

Commenting on the Giving Voice Awards, Kevin Doherty, Chief Executive, Disability Action, said: “We’re delighted to have been able to work in partnership with the RCSLT on this project. What it demonstrates is what we believe, that everyone has a right to have their voice heard. What is important is that all of us listen to the incredibly powerful message that the exhibition has delivered.”

 

About the Royal College of Speech and Language Therapists

The Royal College of Speech and Language Therapists (RCSLT) is the professional body for speech and language therapists in the UK, representing more than 16,000 members. It facilitates and promotes research into the field of speech and language therapy– the care for individuals with communication, swallowing, eating and drinking difficulties. It promotes better education and training of speech and language therapists and is responsible for setting and maintaining high standards in education, clinical practice and ethical conduct. The RCSLT’S Giving Voice campaign is highlighting the importance of speech and language therapy by sharing the life-changing stories of those who have benefited from treatment and by demonstrating evidence of speech and language therapists’ efficiency and value for money. For more information on RCSLT and Giving Voice visit www.rcslt.org and www.givingvoiceuk.org

 

Speech and language therapy…What’s that?

My journey My Voice was only made possible through the help of speech and language therapists throughout Northern Ireland. They took the idea into their hearts and invited their clients to think about taking part. In many cases our brilliant participants were supported to tell their stories by their therapists. Here Emer, a speech and language therapist from Northern Ireland, tells us more about what a speech and language therapist actually does and how they can change lives. 

"Speech and language therapy? What's that?" 

I get into a taxi at 8am and ask the driver to take me to a local health centre. The first question is always the same. "You a nurse love?" "No." I reply. "I'm a speech and language therapist." The taxi man jokingly responds, "Can you teach me how to talk right then?"

This happens more often than you would think. When I tell people I'm a speech and language therapist, most are unsure of what this means. Some ask if I give elocution lessons. Some think it's related to learning languages like French or Spanish.

A very small number of people will understand, having had a relative or friend who received speech therapy. But most say, "Speech and language therapy? What's that?" I think this is a sign that we need to proudly spread the word about what speech and language therapy is, and how it can change lives. 

As speech and language therapists, there is such a wide variety of people who can benefit from our services. We work with speech sounds, language skills, voices, swallowing difficulties, people with brain injury, people who have had a stroke; the list goes on. 

But how does that translate into real life? What does it mean? And what do speech therapists do?

A speech therapist will modify the diet of an elderly person with dementia so they can continue to have a cup of tea every night despite having swallowing difficulties. A speech therapist will help a 19 year old guy with a brain injury create a communication chart so he can still communicate with his friends when he's out at the weekend. A speech therapist will help a teacher who has lost her voice find it again so she can keep passing words of wisdom on to the next generation.

A speech therapist will provide a lady who has had her voice box removed due to cancer with a device that will allow her to speak artificially, so her children can hear her telling them she loves them again. A speech therapist will teach a seven year old how to produce sounds correctly to stop his dad worrying that his speech will hold him back from making friends.

A speech therapist will contact the teachers of a 10 year old girl with autism and provide them with strategies to help her thrive in her school environment, despite any difficulties she may be having. A speech therapist will refer a man who has been diagnosed with Parkinson's disease to a local support group when he says he’s been lonely since his wife died and would like to befriend people who have a similar experience with Parkinson's as him. In other words; a speech therapist aims to improve the quality of life of anyone in need of our service. 

Next time someone asks; don't be afraid to tell them exactly what a speech and language therapist is. With everything we do, you won't be stuck for words!

                                                                                          Emer, SLT, Northern Ireland. 

a speech therapist aims to improve the quality of life of anyone in need of our service.

Putting Communication disability in the frame - My Journey My Voice exhibits at Kilkeel library.

My Journey My Voice continues its tour of Northern Ireland with an exhibition at Kilkeel library from now until 29 September.  The exhibition is being hosted by Kilkeel Library as part of the the My Journey My Voice Libraries NI tour.  

 Joan White, Northern Trust speech and language therapy manager (centre) and Danelle McNulty, speech and language therapist (left) welcomed Margaret Ritchie MP to the exhibition.  

 

 

 

 

Minister for Communities launches Libraries NI Tour of My Journey My Voice at Lisburn City Library

Communities Minister, Paul Givan MLA launched a My Journey My Voice exhibition roadshow from Lisburn Library, Northern Ireland on 4 August 2016 to raise awareness of communication disability.

Minister Givan launches the Libraries NI tour of My Journey My Voice at Lisburn City Library on 4 August 2016.

The multimedia portraits and stories exhibition was commissioned by the RCSLT and is currently being hosted by Libraries NI.

Neill Birnie narrated a short passage he wrote for this exhibition and gave an insight into the barriers he faces on a daily basis. His listeners have been extremely moved by his stories which have included four Ministers, numerous MLAs, a lord mayor, a deputy lord mayor, health care professionals and numerous members of the general public.

His words have resonated, as a result he has now been asked to participate in regional work on developing hospital passports.  This is a particular issue for Neill as he has been the recipient of poor medical practice, which resulted in DNAR being written on his medical admission notes on more than one occasion.

Libraries NI tour of My Journey My Voice launches tomorrow in Lisburn City Library

RCSLT NI are getting very excited about the launch of the Libraries NI tour of My Journey My Voice tomorrow morning in Lisburn City Library. The Deputy Mayor Alderman Stephen Martin will be welcoming over 50 guests and some VIPs to see the exhibition and hear one of our participants Neill Birnie from Templepatrick recount his American adventure.

We will keep you updated with photos and comments from the event.