see and hear change
It’s so very hard sometimes to break from the mainstream, to place your head above the parapet and talk so openly about yourself - but here we are, I have been lucky enough to have been given that chance - and after some gentle (and some not so subtle cajoling from my husband to speak up more!), persuasion - I felt it’s time to update my story out here, not just as ‘Joanne from the Fell’ - but as a warrior, as a woman, a mother and mentor, an advocate and public figure with, as I see it - a responsibility to represent those from my community and use my platform to affect meaningful change wherever I can.
I was born in Gateshead in 1974, it was discovered I was profoundly deaf at 16 months old. My family and I navigated life embracing my deafness and the subsequent discovery of my progressive sight loss - through challenges and discrimination, inadequate support and an ongoing fight for inclusion, I continue to fight.
Let me tell you a little of what brought me to this place, to the woman featured throughout this wonderful website that has been created by some of the most truly gifted, kind and passionate allies who have given more than I could have ever asked for, all in the name of agency, advocacy and empowerment - I thank you all.
“Jo has a deep seated sense of justice and equity - an intuitive gift for seeking a path of redemption, of empowerment and outright good for all.”
Steve White
Warrior with power
“I want to be the woman I needed as a girl.”
As someone who was born profoundly deaf, I was still very much (or felt I was), part of something good - the joy of life, connections and learning - back then, school was more about developing my confidence and developing a sense of the world around me. Words were going over my head, teaching a deaf child in a mainstream school wasn’t straightforward - but as a choice, those responsible for me didn’t want to ‘send me away’ to a residential school just because I had a hearing loss, I deserved parity - I deserved to be along side those I’d grown up with and grow together just like every one else.
As the years went by, each decade brought more friendships, more learning about the diverse world we all live in - indeed, a society when we are understood, respected and given a chance to be our true authentic selves can be a beautiful world, but surely, one shouldn’t have to explain, self advocate, again and again when they can’t meet you, even at your most basic needs.
In my early career, which began as a librarian at the History Research Faculty at Northumbria University, it was a perfect start to feed my curiosity and my will to learn about what makes people, cultures and events shaping our way of life, and most importantly, our human rights. It began a life long fascination for the people who have paved the way for us to live our lives with freedom and with something nearing equal rights as is possible. It was a joy to work with the students, to explore with them the subjects that interested them and me too. It was around this time, as a very confident and self aware young woman at a hectic time of my life, with exams and all those hormonal changes, I repeatedly fainted and I found myself undertaking tests in hospital. As a family, that's when we all heard the words Usher syndrome for the first time.
There were so many questions - so many unknowns, living with the thought of, possibly - heading towards complete blindness as well as being profoundly deaf was such a weighty prospect - we were all dealing with the initial challenge, now this . . .
Would I end up in residential care?
What kind of future am I faced with?
What am I going to do with my life?
We were all left with so many conflicting opinions, so much confusion, uncertainty and more difficult questions that we just could not get any concrete answers to.
Then, it was decided I didn't have Usher syndrome - but rather, I might have Retinitis Pigmentosa and deafness - but the seeds of doubt had already been sown, what could I do?
“I simply had to carry on.”
I secured an appointment to run the hospital library at the newly developed Hunters Moor Neurological Rehabilitation Centre, Newcastle. This role in my early 20’s was when I first became involved in the intriguing world of medical research sciences. Meeting the incredible minds that work in this field and talking about the groundbreaking science that they were working on and the challenges they set themselves - to fight for a better quality of life for those born with or faced by, life changing incidents, it was an inspiration that has stayed with me a lifetime.
It wasn’t long after, around the implication of the Disability Discrimination Act in 1995, and the ideas around the social model of disability, that led to my professional development and unleashed the activist in me, I was unwittingly at the time, surrounding myself with the very people that would inspire my work in the latter part of my life.
In the very last years of that decade, my focus shifted to working in the communities, with a more hands on approach face to face with those that had reached out for help. The Disabilities Employment and Enterprise Project at the Tyneside Economic Development Company on South Tyneside, meant I was able to deliver sessions in advocacy and life skills, tackling mental health and combating loneliness, directly to the people who needed it the most.
It wasn’t long after that I became ‘the regional voice’ for Disability Rights UK, representing those touched by disability across the North of England and reporting to central Government.
It is around this time I found myself in the Houses of Parliament for the first time and actively worked alongside Lord Jack Ashley and with the All Party Parliamentary Group (APPG), for Disability, lobbying central Government on many initiatives surrounding Access, Employment and Education.
Closer to home, I noticed my sight was deteriorating and aged 29, my suspicions were further confirmed when I was registered as severely sight impaired and handed a certificate of Vision Impairment and told that I had Usher syndrome. Like the majority of others in my position at the time, I took their word for it. I began long cane training, and felt I had one last thing to do - I put myself on the list for cochlear implants.
Whilst facing some big changes in my personal life - I was proud to become a Finalist for the Pride of Britain Awards for my work at Sense, in which I facilitated and oversaw a Peer Mentoring Network for those with Usher syndrome across the UK.
I was scheduled to have surgery for my bilateral cochlear implants for February 2014, and the switch on would be a month later - and that’s probably where most of you got to know, of Jo Milne.
It was a defining moment, it was overwhelming, it was joyous and wondrous - the sense of relief, knowing that I could now rely on another sense to navigate the world, as another one was receding - was all consuming, the tears that I shed that day, to this - are of thanks and reassurance, the road felt more clear again, the prospects more lighter and clearer than before.
The YouTube clip that was picked up by the worlds media went viral, viewed more than 12 million times, featured in Google’s 2014 year review - it still sends a shiver down my spine and is quite often the first topic of conversation when people meet me. In the first months after my cochlear implants video went viral, a leading book house offered to publish my autobiography, Breaking the Silence was released on the anniversary, one year later in 2015.
The media attention was intense - Loose Women, This Morning, Channel 5, BBC Springwatch filming me listening to the dawn chorus for the first time.
‘take your sweet time’
Specially recorded for Jo (again!), during lockdown
Then came the news that Paul Noonan and BellX1 had written a song, ‘Take Your Sweet Time’ for me.
The music journey was incredible, it all started with a playlist compiled by a good friend for me, and sent in to BBC6 Music’s Lauren Laverne. Featuring a song for each year of my life, it began a close relationship with the show, it’s presenter and the ‘BBC6 Music family’. I regularly appeared on her show, the audience were even asked to help me to choose the first song at my wedding. I met the band Elbow, ‘One Day Like This’ being one of the first songs I’d ever heard. Then I found myself sat at the white piano where John Lennon performed Imagine. I was even backstage at the ‘Late Night’, in the Netherlands where the host, Humberto Tan played Bob Marley ‘One Love’, dancing together I was wondering what was next! Dan Walker and the Channel 5 team presented me with a surprise ticket to Glastonbury!
(Like I said, it was incredible!)
Over time, a close bond was formed with the Singing Osmond Family (themselves touched by hearing loss in their family), and Merrill Osmond to this day continues to be a source of unwavering support. I filmed for the BBC in Bangladesh, in collaboration with the Starkey Foundation, delivering hearing aids to disadvantaged children, ‘The Gift of Hearing’ went on to win a Royal Television Award for Best Factual Documentary, all humbling and fulfilling experiences.
Within a space of a year, the paperback edition, an audiobook, then a Japanese release of Breaking the Silence were all released. A mystery benefactor sent me on a whistle stop tour of the Seven Wonders of the world - the list was started, and all were ticked off, one by one, what a journey.
I Climbed Ben Nevis, Scotland.
I Climbed Mount Snowdon, Wales.
As I was completing those bucket list challenges and some jaw-dropping experiences like climbing the Sydney Harbour Bridge and trekking along the Inca Trail in Peru to Machu Picchu, as life would have it... I met a handsome paramedic, and within a few years, we were married and became parents to a beautiful little boy, then 16 months later came along our beautiful daughter. I see so much of myself in her, and being a mother to my children is the most humbling and most important job in my world and one I absolutely love and am so thankful for.
I founded the charity Cure Usher Syndrome in 2018 after witnessing the continued low awareness of my condition, always with a dream and a vision to raise awareness, to treat and eventually cure Usher syndrome.
“We have created this book to celebrate these HEROES, We’ve searched far and wide within the healthcare industry to bring you stories from the everyday heroes who are improving countless lives all over the world.”
HAVAS Lynx Group
Global Healthcare communications group, HAVAS Lynx featured me as one of their Healthcare Heroes for my work delivering hearing aids to children in Bangladesh. I received recognition from the Prime Minister in his Point of Light award and was invited to Buckingham Palace for tea on the lawn to celebrate the work undertaken so far in campaigning for more representation and funding for research.
During the COVID19 Pandemic, I was instrumental in establishing the very first All Party Parliamentary Group (APPG), specifically for Usher syndrome, ensuring the voice of my community is heard at the centre of government and I am incredibly proud that the charity I founded is now the Secretariat.
Northumbria NHS Foundation Trust with funding from NHS Charities Together collaborated with me to create an educational film to help inform healthcare professionals. Filmed just after Lockdown it was released to coincide with a recognition of the birthdate of Charles Usher, the Scottish ophthalmologist who in 1914 gave his name to the condition I live with.
Cure Usher Syndrome has gathered a talented and dedicated board of trustees all working to directly fund research, work closely with Parliament, keep collaborating and campaigning - the future looks promising for those living with Usher syndrome in the UK and beyond and the change I have advocated for - all my life - I feel is finally being realised.
The story so far highlights how much I have experienced, endured and achieved - but for me, it serves most of all as a foundation for what is still to come. My work, my dedication and aspirations are unwavering, and I will stop at nothing short of - a cure for Usher syndrome.
Jo Milne and Northumbria NHS Foundation Trust
“my stress levels would be greatly reduced if people had more awareness of what Usher syndrome is”
Jo's autobiography, Breaking the Silence: My Journey of Discovery as Transformative Surgery Allowed Me to Hear for the First Time has received many 5 star reviews and features on Amazon with star editorial reviews including from The Times and Elbow.
Jo's book is a remarkable and beautifully written memoir that will serve as an inspiration to everyone who reads it. By turns, heart-breaking and heart-warming, it is the incredibly uplifting life-story of a woman who refused to give up hope and always lives life with a smile upon her face.