If we want to live in more tolerant times – openness is the key.
In both my professional life and personal life, I spend a great deal of time with children and teenagers. Whether I am directing them, tutoring them, workshopping with them or performing auntie duties to my numerous nieces, nephews, cousins and close friends’ children, it gives me plenty of opportunities to notice the ways in which their social world is an entirely different one from the one I grew up in.
Fundamentally, youngsters don’t really change from one generation to the next. Their needs, worries, dreams and fears are all variations on the same theme. However, their backdrop has undergone dramatic changes over the years; few more dramatic than in the past decade or two, with the introduction of a parallel, virtual universe.
I am convinced that if someone threw me in the DeLorean but kept time at a standstill, so I had to do it all again in this modern world, teenage me wouldn’t last long. Why? Social Media is a big part of it. I find myself constantly astounded when I see the apparent addiction my teenage niece and nephew have to their mobile phones. They talk in a language I barely understand, asking about streaks and using hashtags like they are going out of fashion.
For my generation upwards, it seems possible to engage with social media in a far less all-consuming way. We can remember a time when it didn’t exist, when phonecalls on landlines were a necessary means of communication and letters in the post were a treat, both to send and receive. We remember when being followed was something to report to the Tolerant Times – openness is the keypolice, and the only way to share photos was to get together and look through the prints.
The younger generation has been born into an age where it is perfectly run-of-the-mill to create an ongoing commentary of their every move online; where self esteem is measured by virtual likes, retweets, shares and favourites.
Don’t get me wrong, I am all in favour of social media for a great many things. Personally, I actually have something of a love / hate relationship with it. I hate how voyeuristic it encourages us to be, but I can see the benefits of it when handled with care. Having said that, I can’t deny finding it scary for the youth of today. I worry about the indelible marks young people make on their virtual universe, without even realising they have done so.
There is something, though, that fills me with hope for the younger generation. It is something bigger than internet habits and text messages. It is something that counters all the fear I have about youngsters’ lack of real interactions. It is something that shows them to be far more forward thinking than we are, and it is something I have been musing about since introducing Nelly to my students.
I am certain that young people are more tolerant in their thinking. They seem to accept more readily people’s conditions, challenges, differences and illnesses, whether they can see them or not. The fact that disabilities and special educational needs were held under the microscope and policies written up between 1995 and 2005, I am sure, plays its part.
Children are growing up with knowledge that their classmates don’t all function and develop in the same way. Some go to the school nurse for daily medication, while others have Teaching Assistants permanently at their side. Of course, there isn’t necessarily an increase in these needs, just an openness about how we deal with them.
When my pupils (the tots and the teens) met Nelly, there were a range of responses – all of which encouraging and refreshingly honest. There’s a girl in my class who has one one of those all the time and she really doesn’t like it, so I know how you feel ; As long as it makes you better, it doesn’t matter what it looks like ; You’re still the same Emma anyway ; It doesn’t even look weird. Such acceptance and understanding from the mouths of babes was comforting when I needed it most; if I’m honest, they put some adults to shame.
When I talk to mum about her choice to encourage me to keep things to myself whilst I was growing up, one of the reasons she reflects on, is that she couldn’t bear people to know and to look at her perfect, sunny little girl with pity. I won’t dwell too much on this, or mum will be beating herself with the guilt stick (if she isn’t doing that already) and I suppose I can understand what she means. I also know that was only part of her reason. In truth, it was her way of coping with an incredibly difficult situation. Who can say what was right or wrong thirty-odd years ago, in a time when dyslexia was taboo? Plus the fact that it contributed to my becoming the survivor I am today, so I certainly won’t complain.
However, I can’t help but wonder if children these days have a slightly easier ride. It is ok to be different. In fact, disability doesn’t even seem to make people stand out anymore. There are presenters on children’s TV with visible disabilities nowadays. We see supermodels posing with colostomy bags in full view going viral with their photographs to encourage positive body image. The hype that surrounds the paralympics is comparable to the fan-fare given to the arrival of a teenage heart-throb in town and there are countless role model actors (and even fictional characters) whose disability shapes their identity.
The most interesting thing is, when you ask children their views on the likes of Ellie Simmonds, Cerrie Burnell or RJ Mitte, those who are familiar with the names would be most likely to talk about their talents or their hair colour or the sound of their voice. It is true that some parents will struggle with the notion of their children coming face to face with such imperfection on TV, but these are the parents who want to shelter and protect their children from reality. Those cosseted children are the ones who will, most likely, struggle to deal with any hardship that comes their way in later life.
Most of the youngsters themselves seem to have little trouble accepting these individuals in the public domain and appreciating what they do. They have an incredible way of seeing beyond the disability to the point that it is almost irrelevant.
Where am I going with this?
I need to make a bit of a sideways leap here and take you back three and a half decades to the year I was born. The middle of the Gordon girls, Shelley, was 6 when mum and dad broke the news that there was another baby on the way. Mum asked her, How would you like to have your very own Baby Alive? For those who don’t remember, Baby Alive was the predecessor to Tiny Tears: a crying, weeing, burping doll, and one that Shelley adored. Needless to say, she was delighted with the prospect, and genuinely thought the baby that was coming, was for her.
I’ve told you before about mum’s lesson to love damaged and broken toys ten times more than the perfect ones. Shelley needed no encouragement to love her new baby sister, bonding with me the moment she laid eyes on me in my incubator; calming me with her fingers on the glass, and soothing whispers. Finding out that I was somewhat broken did nothing to deter her either. I will never forget her ordering her London boss to give her leave from work to return to Leeds to be with me for my first major operation. She made it quite clear that, regardless of whether or not he approved, she would not be in work for the duration of my hospital stay. Evidently, playing mummy to me stood her in good stead for her five gorgeous children, and the time at my bedside taught her a thing or two about her strength.
The youngest of Shelley’s five-a-side team, Uzi, was born with a rare condition called Tuberous Sclerosis Complex. At eight months pregnant, Shelley was reversed into in the supermarket carpark, with child number four in the pushchair. Strangely enough, this was a blessing in disguise. Thankfully, Gali in the pushchair, was absolutely fine. However, an ambulance was called immediately to take Shelley to hospital where she had an emergency scan. It was then that she found out there was a very high chance of the unborn baby having TSC.
The remaining month of the pregnancy was very frightening for Shelley and her husband, Paddy, as TSC is an incredibly complicated condition. There are a huge number of variables in terms of the outcome, with no set pattern to how the condition really presents. That said, this advance warning meant that Uzi was under the best care in Manchester from day one.
TSC is a condition which causes benign tumours to form in any of Uzi’s organs. These tumours can lead to all manner of complications, often causing developmental delay, autism and epilepsy among other things.
The way Shelley and Paddy have dealt with every challenge thrown up along the way, is nothing short of inspiring. They have opted for openness where Uzi is concerned, choosing to make people aware of his condition to ensure that he is given the support he deserves. This doesn’t mean they brandish the condition, or use it as a way of defining their delightful little boy. There is a fine line between this and healthy disclosure, and it’s a line they seem to walk with ease. Uzi’s brothers and sister couldn’t possibly love him any more than they do, and they understand the ways in which his needs differ from their own, meaning they are on hand to help when they can.
A common character trait in people with Chronic conditions, is a reluctance to ask for help. Obviously, at three, Uzi is too young for this particular issue, but his parents aren’t. It is a difficult thing to hold your hands up and say you need help. We have such an inherent fear of being judged, that we would often rather struggle on regardless. Yet if we are open about the ins and outs of a condition, we will often encourage people to come forward and offer help, before we even have the chance to ask. After all, someone can’t offer their support if they don’t know you need it.
A cousin of ours has become something of a running junkie, and has decided to run his second marathon in the not too distant future. When he asked Shelley and Paddy if he could run to raise money and heighten awareness for TSC, with Uzi as his poster boy, they were delighted. Who wouldn’t be?
Uzi has defied the odds at every hurdle so far, proving the professionals wrong with a number of things. Shelley and Paddy were told to prepare themselves for the fact that he may never walk or talk. You only have to watch him for a moment to see him give us all the run-around; his latest trick of climbing out of his cot certainly keeps us on our toes. As for his internal juke box, the pleasure is ours. It is a treat to listen to him singing his medley of songs, nursery rhymes and Hebrew songs alike. Uzi is also able to communicate with us, making it clear when he wants or needs something, and demonstrating understanding and appreciation of complex ideas.
Uzi has an incredible personality, and lights up the room the moment he enters. His condition does nothing to change how loveable and enchanting he is, but it does mean his needs are more complex than the average three year old’s.
In February half term, Uzi suffered a massive seizure, which left him in critical care on a ventilator for 24 hours, and in hospital for a week. The nature of TSC means that the likelihood of seizures increases with each seizure episode, and there is no way of knowing what lies ahead. The Tuberous Sclerosis Association is a charity dedicated to funding vital research into Uzi’s condition, and they are making breakthrough discoveries with regards to treatment all the time.
By being open about his condition now, I think Shelley and Paddy are making it easier for Uzi to, one day, accept the hand he’s been dealt. There is nothing that makes it fair and there is no use pretending the world is anything less than cruel. However, to grow up in a world as accepting as the one the younger generation inhabits, should be a liberating thing. I really believe that to settle into more tolerant times – openness is the key.
If you would like to read our cousin’s fundraising story, visit the link above. Any support will be greatly appreciated – every penny really could help make a difference.