The butterflies in the stomach, looking desperately forward to seeing your footie mates, the excitement for a fresh new season, catching a close up glimpse of your heroes, plenty of goals and if you’re lucky, 3 points to kick off the new season. I remember how it felt when I was a kid. How I lived and breathed football. I spent the entire school holidays depressed, looking in the sports pages of the newspapers and following all the signing news, just gagging for the middle of August to hurry up.
This is what hundreds of thousands of football fans will be feeling tomorrow morning. Waking up ecstatic that it’s match day and the start of the Premier League season. But not my little footie-mad boy. Because he is currently denied the joy of this experience, just because his beloved football club doesn’t have a toilet that he can use yet. This week he has been noticeably emotional and to say that I feel horrendous that he feels so left out and so different is the biggest understatement in the world. He is just five years old. He also happens to have a disability that means he is incontinent and cannot walk.
It’s not like we’ve not been asking. For the past year we’ve been shouting from the rooftops the desperate need for a Changing Places (a special toilet with an adult sized changing bench and hoist) at Southampton FC’s St Mary’s Stadium, along with many other fans, some of whom have been asking the club to install one for over 3 and a half years! I know, that’s right. That’s a long time to wait for a wee isn’t it.
Without the Changing Places, Hadley would have to lie on the toilet floor to have his toileting needs met. And that’s something that I just cannot bear to put him through. Have you seen the floor of a toilet in a football stadium?!
But he doesn’t care. He’s really cross with me. Because he wants to go. He wants to see his heroes and he would put up with that hideous situation, in fact he would barely bat an eyelid at it, because he is so used to having to go through it. He’s never known much else in his little life. And that breaks my heart into pieces. But what’s more, is what I can’t tell him. I can’t tell him that I can’t lift him on and off of the toilet floor and in and out of his wheelchair because my back hurts too much and I’m too scared I will drop him. I’m petrified I will hurt my back even more and not be able to care for him properly. I can’t tell him that because he will feel guilty. I can’t bear for him to feel guilty. It’s not his fault that he has a disability.
So I can’t let him go. It’s just not possible. I have to be ‘bad’ Mummy. I have to say no. When all I want to do is say screw it, I can’t let you miss out any more!!!
Perhaps I’m being unrealistic. Southampton FC seem to think so. Perhaps the football club called all the mobile toilet facilities last year and asked to hire one this season and there were none available. But if that’s the case, then why won’t they tell us that? Why are they just ignoring our cries for help? I’m pretty sure it’s because they didn’t. Because they didn’t think to make provisions for the start of the season. Because they think it’s ok for us to wait a bit longer. (Hey we’ve waited this long, what’s another few months?!). But have you ever tried telling a five year old child to wait?? To wait for something they’ve dreamed of. And that all of their friends and family members don’t have to wait for? And really, when it comes to the safety and dignity of our children should they have to? Should that not be a given? In 2016. At the home of a multi-million pound Premier League football club? When a bit of cash and a phone call is probably all it would have taken to secure one. There were plenty of them at Glastonbury this summer, so I know they exist!
It’s not that I’m not over the moon that the club has finally said it will install a Changing Places facility after brushing it under the carpet for years. I am thrilled to have won that particular part of the battle. (Although they have still not said this publicly so I’m a little worried, not least because they continue to lie and say that I’m the only person to have ever asked for this facility!) But that doesn’t help me tomorrow at 3 o’clock when faced with the tears of my baby boy. The little boy who has more strength and determination and stamina already than I’ve ever had. He surely deserves more.
We have promised the kids a trip to the beach in the morning to try to take Hads mind off of football (and mine). A beach where there is a Changing Places, ice cream and hopefully sunshine and laughter. But we will all secretly be thinking about the score. Because despite everything. We want our team to win. We are red and white through and through. We are Southampton. And we’ll still celebrate a win like every other supporter and brush off anything else (cause hey, it’s a long season right, the first game means nothing!!)
I’ve been overwhelmed by public support for us in our plight to get Changing Places everywhere, but none more so than this particular campaign. Even Hadley’s five year old friends have joined him hand in hand to show solidarity for their school pal, whom they’d already do anything for. But five year olds have more empathy than grown ups. I’m learning that fast.
I feel so sad tonight. I had to write this down to get it out of my system. I’m asking myself a lot of searching questions. Perhaps I put too much importance on this? I know that it feels worse to us, because we are living it, than it would to any business. I know I didn’t understand that people had to go through this until I went through it myself. And when I look at what is going on I almost feel like giving up. Because Hadley has worked so hard to over come his insecurities and anxieties and this may well have pushed him backwards. Because he is a clever, intelligent little man who understands all of what is going on. Even when we try to hide our upset and anger. And I feel hugely responsible for that. I didn’t go into this thinking it would take forever. I thought once people knew that disabled children and adults had to lie on toilet floors they would make changes immediately. But now we are knee deep in this battle, it’s almost impossible for him to not understand what inequality is. For him to not feel like he’s worth less than other people because he is incontinent and comes with a few extra needs and wheels. That’s a huge deal. And I’m struggling with that.
But who’s fault is that?
If I didn’t try to change the world and just let him continue to lie on the floor he would never know any different. But it’s catch 22. What would you do? Nothing and let your child lie in urine and learn in the long run that it’s degrading or fight and try to manage their emotions as they understand more immediately that much of the world still treats disabled people like second class citizens?