I was asked to write about something I’m passionate about, which is difficult when you feel like you have a list that could go on for days. So, I’ll just shortcut and say that I’m passionate about humans. All humans – regardless of the package they arrived in. Many of you won’t be surprised at that, if you’ve watched our TEDx talk and know something of our journey – mine and Ella’s, my eldest daughter. We’ve travelled some miles in the past thirteen years and more in the past six or seven. My daughter Ella has been deafblind from birth but could see enough to do things like any child. Tragically she lost her eyesight when she was seven years old due to misunderstanding of her as a human being, who’s different – just like we all are. She sits in a space we call the grey, human space and us with her. She isn’t part of the left or right, nor is it black and white in terms of extremes and options about how we step forward daily. Ella just sits in the present, grey space, and I think most of us find ourselves there at this moment in time.
We are grateful to share our grey space with the ‘Lauras’ – a group of incredible humans who walk with Ella and our family daily. Ella named them the ‘Lauras’ after meeting her best friend Laura. She could sense that those who followed her arrival, all had a connected set of values and belief about what could be achieved, and they saw her as a human first, a person just like them. We have learned to follow Ella’s lead with regards to how we find these incredible people. They aren’t superhuman, they are just real, authentic people with an internal will to try and a belief in positive human relationships being the most powerful thing in the world. You often find that they have walked the grey space a lot themselves, so they know that trying and human connection are essential ingredients for success. Trying is not something we often talk about I find; humans seem to find comfort in extremes or opposites a lot of the time, but people like Ella don’t see the world like that so much. It doesn’t stop her being able to sense who works for her and who doesn’t (“bye bye” is a clear indicator for that), or how to let you know if the environment is just not working, it’s more about her level of presence and ability to be in the present, even when it is tough.
The grey space is a place where the world doesn’t always fit for you, it’s made up of a rocky road of uncertainties and stress can be a constant companion on the journey. You don’t have the luxury of the rules working or fitting, you find most of the time, because they were written to accommodate a majority and not a minority. That’s not a blame scenario, it’s a view that society has a lens that still doesn’t accommodate everyone; that it’s skewed in its view of including every human, even though we are so far ahead in many other ways. Many people have talked and discussed about how disability can remain on the fringes of society – and far better and more eloquently than I could. So, this is more of a human sharing of experience and a view into the world we are walking.
Within the grey space you learn a lot. Ask any parent of a child who sits there, and they will tell you that it demands that you work on your tip toes, in a minute by minute way some of the time, waiting to see what curveball is thrown next. We encounter rule books and systems that have a way of making us feel like we’re at the edge of reason; we question our own capacity and capability a lot and we can hold fear in our hearts, as often as joy. The grey space equips us with tools we didn’t know we had, nor needed to learn how to use. Whether it’s law, education, social care or health – we’ve had to learn about these spaces, study them in detail and understand how they work, relevant to how our children can fit, or not, within them. We’ve mastered the ability to multitask at speed and learned to rely on our tribe, and by that, I mean people who can see us and our children for who we are. Humans, just humans like any other, and we crave belonging in a world that just isn’t set up for us as a whole – yet. And I’d always say yet, because in the grey space we also conversely have an overflowing capacity for love, optimism and belief, despite curveballs and situations we can’t fathom. The grey space asks that we remain present, and don’t look too far back or forwards, because we can’t hold on to too much or we would drown in negative thoughts and the future really isn’t a known at all – we know that, and there will be as many ups as there are downs.
It’s a hard road, but it’s a human road. It’s a lot of work, but it brings a lot of joy. We’re grateful for the small things and we appreciate our fellow people and the positive relationships we find. The trust walk within the grey space is a tightrope most of the time. We might fall, and sometimes we do, but we know that we will get up and walk again, because the most precious thing in our life needs us to keep going. We learn to trust who we are, as individual people, we give ourselves a hard time but we also give ourselves a break, because the person in front of us asks that we do that – they don’t demand that we are anything other than who we are. It’s enough, it’s more than enough. The passion and drive that we have can overwhelm people, but for us it’s a kind of ‘normal’ that’s come about, because to ensure our children have a seat at the table like anyone else, we have to work that bit harder and challenge things that don’t include them, and therefore exclude us too.
I’ve watched so many things over the past six weeks and thought a lot about humans and how we are coping, thrust into the grey space of not knowing, without certainties and not being able to do as we would usually. There’s been a lot of stress, anger, hurt and blame but there has also been a huge amount of love, kindness, compassion, empathy and trust in droves. In essence, right now we are all walking that raw human space where we are all having to learn how to reframe our view, and relearn that it does not matter who we are or what our differences are – because we are all worthy of a space to be, and we all have value. At the heart of this, relationships have become even more powerful because to help one another through because we have had to lean in. Lean right into trusting one another, aiding one another and accepting one another regardless of difference.
There isn’t a right or wrong at this time, there is only the grey space and human will to make it work. It isn’t about racing to the finish line anymore, it’s about learning to walk slowly again and see the world for what it is, and to lift the veil fully and reshape the lens so it can become what it has needed to be for so long. So that we can all thrive, all of us. I know it isn’t easy, not for one minute, but we are managing to find a way to be, because despite the curveballs and the unknown, we have the capacity for great change, and we can see the value in the shift from the way were perhaps, to the way we need to be for the future. And when this is over, we need to hold to those things we have learned. It isn’t a quick switch to a new way, and back to the old – it won’t work anymore, because we are different. But we are better, and we are being more kind and empathetic, because we are thinking like humans again. I truly hope we will listen more to our fellow people, like Ella, who have walked the grey space for a very long time, just waiting for us to see what they see, and feel less fear about what it is to be in that space, to trust one another, because never has there been a time like this – a chance to really embrace who we are all supposed to be – human.