Written by Jo Milne


Jo Milne: A diary of firsts and lasts

Since the world watched her hear for the first time, Jo Milne has been on a journey into sound, all the while knowing her world is getting darker by the day. This week, she’s on another mission.

Jo on board a bus, promoting the new posters

Jo and Stagecoach Newcastle worked on hard-hitting posters highlighting #hiddendisability.

I’m clutching a mug of steaming tea, there’s a faint but pleasant whiff of petrol and you can see the steam coming from mouths in the crisp winter air. Huddled in our disability awareness training session, plastic chairs scrape along the stone floor.

Down to earth folk in their yellow high-vis jackets; I notice creased faces as the banter erupts to passionate discussions using Geordie dialect, almost echoing in the warehouse style building that is home to the region’s bus drivers.

They understand I may use a mobility cane to get around but I can still ‘see’ them stood in front of me. They understand about Usher Syndrome.

They understand depression is not a sign of weakness; they understand someone with chronic pain is often subject to cruel stares as they choose to sit at the front of a bus.

No one wants a heavy heart from witnessing our loved ones being ridiculed in public, pain masked in their eyes when accused of being a fake.

Jo as a girl, wearing her old-style hearing aidsI was that little girl who would tuck her hearing aids underneath her hair, desperate to be like everyone else. Going from wearing a metal box with its thick blue straps weighing down so heavy on my chest to wearing discreet flesh coloured, bug shaped hearing aids meant that, as well as my childhood, the shackles that signalled my deafness had gone forever.

I may have looked like an ordinary pre-teen girl and the cool logos were instantly visible on my fashionable baggy tee. But it was during this time in my life when I really began to feel different.

I would secretly wish I wore magic shoes in a Cinderella-like myth, yearning to live in a world where people were more understanding. People mistook me for being ignorant, with head-shaking and insults from strangers quick to label me ‘stupid’ as their calls of ‘excuse me’ escaped my ears.

I recently launched my #hiddendisability awareness campaign with public transport staff with the message: Don’t judge on what you see. It’s astonishing how many of us will have that special someone in our family unit, living with a disability that is not immediately apparent, and so described as ‘invisible’.

bus Usher Syndrome awareness posterMy arm jolts as I feel my cane hit against something hard. I look up at the familiar classical dome of St Paul’s, flanked by modern skyscrapers against the skyline. Seen from the South Bank of the River Thames, it’s a breathtaking contrast between the old and new and I can’t help but do a little jig inside. I’m proud at how far I’ve come as I meet staff from Transport for London who are eager to support my campaign.

Raising awareness is something embedded deep inside me, with the same hopes as when I was a child and more so, a young woman. I’d scurry past the lobby at the House of Commons charged for the working day ahead, my briefcase overspilling with case studies of disability discrimination.

We tend to glue ourselves to abstract notions and think that life is in the things around us instead of the very different people living in it. As we navigate life’s journey, scooping up lessons and growing in awareness along the way, we must hope for a kinder world, one that makes me very optimistic and happy for the future… After all, we all smile in the same language.

Jo Milne’s book, Breaking the Silence is out now. Her Facebook page can be found here.

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Written by Jo Milne

Gateshead-born author of Breaking the Silence, ambassador and campaigner. Jo has Usher Syndrome, a rare genetic condition causing deafness then the onset of a retinal disease leading to gradual loss of vision. Those who know Jo describe her to be inspiring as she continues to wring the joy out of life. @jomilne10