November | 2019 | Son Stories by Jessica Moxham

We took the kids to junior parkrun on Sunday morning. It meant being up and out early, but the sense of satisfaction gained from having undertaken a family activity by 10am on a weekend morning is immense. Max likes running the 2km race, though is perhaps lacking some of the competitive edge of other participants, and since we got an all-terrain buggy for Ben one of us can jog alongside Max while pushing Ben, which they both love. Molly tolerates waiting around until she can go to the playground nearby.

We can’t fit Ben in his normal wheelchair plus his buggy plus the rest of us in one car so we go in two cars and move Ben from the wheelchair to the buggy at the side of the road. We’ve done this a couple of times, and as usual last Sunday we were cutting it fine with timing so arrived as the group were warming up, pleased that it hadn’t started yet. Last weekend it was misty and atmospheric but not too cold. Parkrun is an amazing idea – free communal running, open to everyone, and the junior parkrun is just a slightly shortened, slightly calmer, 2km version of the 5k adult run.

Ben was a bit grumpy as we arrived but we thought we’d carry on and see if he came around to this running idea like he has before. James did the pushing on Sunday and Molly and I waited at the start line, cheering them on as they ran past us at the halfway mark. I could see Ben had perked up. As they came towards the end Ben was smiling and we followed them as Max sprinted to the line. As with all parkruns they had set up a funnel and each runner is clicked in as they cross the finish line and then handed a token as they leave which corresponds to their race time. If you have registered online you have a barcode which you can get scanned with your token and then your time will be recorded online. You can then keep track of how many runs you have done, and what your times have been.

As Max sprinted across the line he was clicked through and then handed a token, and James and Ben followed shortly behind but were not clicked in and so not given a token. James asked for one for Ben but by then the next runner had been clicked through and so it was too late. He continued forward to allow other runners through. As Molly and I caught up with them, James told me that Ben had high-fived one of the organisers as they’d been running, which is a big deal because Ben can’t easily control his arm, and we congratulated him while Max collapsed on a bench and demanded water.

It felt like a shame that Ben hadn’t been given a token like Max. It’s pretty hard to find activities that both boys like doing at the same time, and with the help of an all-terrain buggy and an able parent to push, this is something they can do together. When the boys do things together we try to treat the same, and Ben not being given a token did not feel like treating them equally. As James and I talked about it an organiser came up to ask if everything was okay.

I said it felt wrong that Ben hadn’t been clicked in so given a token and the organiser said that they didn’t give tokens to participants that were pushed over the finish line – children needed to run in order to be registered. He said he hoped I wasn’t disappointed, but I was incredibly disappointed – I had perceived parkrun to be inclusive and welcoming, and refusing to give a token to a disabled child who had done the full 2km run, albeit pushed, did not feel inclusive. They hadn’t come across this situation before, he told me that he’d been at lots of different junior parkruns before and had never seen a disabled child participating so they would need to ask head office for guidance. In the absence of direct instructions I suggested they could have erred on the side of inclusion, which would be to give him a token. I didn’t see how refusing to acknowledge him could be seen as anything but exclusion. I said I didn’t see what the risk was – what’s the danger in giving Ben a token and us being able to see his time? It felt like the person at the finish line had looked at Ben, saw he was disabled, and dismissed him.

It was a small thing but it slightly took the shine off an otherwise fun run. We had wondered how inclusive an event it was when we’d taken Ben previously and mentioned to an organiser that we would push him over the finish line. Their immediate response had been that no adult was allowed over the official finish line, and therefore Ben couldn’t cross it either. When James had pushed back, they had agreed he could cross it but it hadn’t been the accommodating response we have generally become accustomed to. Ben hadn’t been given a token that time but we hadn’t noticed.

I don’t want this to be about this particular organiser of this particular parkrun. In this case the organiser took my email address and contacted me later that day to say that he had found guidance which said it was fine for Ben to participate and to cross the finish line and be given a token. He asked that I register Ben online and we make ourselves known to the organiser at the beginning of the run, and that should ensure we have no problems in future. He dealt with the follow up promptly and effectively.

I do want to make this about how people respond when presented with a disabled person unexpectedly. Parkrun apparently has a policy of not letting parents push buggies over the finish lines at junior parkruns, presumably to stop overzealous keen-bean runner parents overshadowing six year olds or running them over. They don’t want adults crossing the finish line because it’s all about the kids at junior parkrun. Fair enough. But a nine year old disabled child being pushed in a specialist buggy is different. In this case, the people confronted with this difference reverted to the only similar rule they could think of which dictated that Ben should be excluded from the finish line of the run. When challenged, they said they didn’t have specific guidance and so they couldn’t, wouldn’t, give him a token because he can’t run.

This isn’t about the token – I’m not even sure Ben cared that much about the token – it’s an exemplar about what some people do when faced with an unfamiliar situation. Rather than thinking ‘oh, how can we include this person’, they think, ‘oh, he can’t run, so we won’t include him’.

We all find it difficult to be confronted with unfamiliar situations, especially under pressure, especially at 9.20am on a chilly Sunday morning. We are all raised in a society that sees kids who run as the norm. We are all influenced by a society that sees disability as difficult and we can’t help but take this message on board however much we (I) try to unlearn it. But let’s just all try to be the person who errs on the side of including, adapting and being friendly. Let’s not assume that if we don’t know what to do, the best thing is to is say no, exclude and ignore. And then try and justify it when challenged, concentrating on the really specific act of running rather than an overriding ethos of parkruns being ‘for everyone’ (see parkrun website).

Let’s all try to be the person who would just hand over a token to a nine year old boy who had just done a high five and participated in a 2km run.

Let’s keep the fun run mood cheerful and not sour the morning of a family who are really proud of themselves for making it out of the house before 9am on a Sunday morning.

Don’t treat my sons totally differently because one of them can run and the other can’t. People who can’t run can still take part in a run.

Don’t make me say the word ‘token’ ever again.

JUST BE THE PERSON WHO WOULD HAND OVER A FRICKING TOKEN.

(Photos below from the playground, post-run. Obviously it’s another playground where there’s nothing for Ben to do, but let’s not get into that now.)

Ben has always had abundant hair. When he was very little he had curly, light hair which his neurologist said reminded him of Harry Styles and when he was one it needed to be trimmed. He had that typical baby thing of very little hair in some areas and way too much in others. The curls were cute but the comb-over + mullet combination was disconcerting.

I did what I had seen other people do and booked a haircut at a hairdressers that did special first haircuts. My mother in law joined me as we tried to entertain Ben while I did my best to hold him upright on my lap. His head was wobbly and I attempted to hold as far up his body as I could without getting in the way of the scissors. Sometimes I held the front of his head while she trimmed the back, or one side while she did the other. It was difficult and the hairdresser was perturbed by the wobbliness of it all, the difficulty of doing what she needed to do as quickly as she wanted to do it. We left with a shorn child, a certificate and a lock of hair. It wasn’t the landmark childhood moment I had hoped. It was an anti-climax – I’d expected to feel like despite his challenges, Ben had taken part in a rite of passage. A First Haircut, with documentation to prove it. Actually I felt like I’d wasted money on a stressful half hour where we had inconvenienced the hairdresser.

As Ben got older his hair grew straighter, longer and it got matted at the back where he lay down so much, rubbing his head from side to side since he couldn’t roll himself. He had an amazing side parting and swoosh of hair to the side, but it was annoying when it flopped into his eyes. A family friend who was a hairdresser offered to trim it at my mum’s house. As Ben sat in his highchair there, bolstered with rolled up towels and distracted by Cbeebies on an iPad, she worked her way around his head taking her time and letting his head loll when it needed to.

This was a good arrangement for us all and over the following years our friend would visit us at my mum’s or at our house regularly, taming Ben’s hair in exchange for cups of tea. As he got older his hairline established itself and it became clear that he was made for the sideburn like a very small, belated member of Supergrass. His hair grew quickly towards his face, and for a boy that is predisposed to being hot and whose body is in a constant state of wiggle, a helmet of hair didn’t help him cool down. Within a few months of a cut the hair would be back, in all its density and effortless perfection, or tousled imperfection.

When he was five Ben had an operation on his brain which meant his head needed to be shaved. In the pre-op consultations the surgeon had said they would do this in the operating theatre, but that we might prefer to do it ourselves first – partly to minimise the shock at seeing Ben freshly shaved post-op, and partly because the team were experts in neurosurgery but not hairdressing.

Our family friend visited us at home the day before the operation and cut James’s hair first while Ben watched TV next to them. When it was Ben’s turn we put an iPad on the dining table near the open doors to the garden. It was midsummer and there was washing drying in the sun as our friend put down her scissors and picked up her clippers. She started at the nape of his neck as she worked up and over the crown of his head, removing all of the glorious hair that had been his calling card since he was born. The surgery was too big and intimidating an event to really grab hold of, but sweeping all of his hair up from the floor felt dramatic and like we were unmooring ourselves from what we knew, taking terrific risks.

Ben’s head wasn’t clean shaven – there remained a downy stubble of hair which was satisfying to ruffle and with one front tooth missing he looked entirely different and incredibly cute. Having been born with very little hair, Max was now three and had more gradually grown a similar mop to Ben’s though darker brown. But now Ben’s had disappeared and the brothers that had looked so similar looked completely different. Max looked even more dark, relaxed, undisturbed in comparison.

Ben had bandage wrapped around his head for the week following surgery, the kind of bandage that cartoon characters have after running into a wall. When this came off we could see the patches where they had shaved the hair completely and stitched up incisions. Over the following months more of Ben’s teeth fell out and his hair slowly grew back but the texture and character was different. Even when the ridge of the scar was hidden, the hair around it was disturbed and you could see a ripple. The hair on the top no longer casually flopped to the side, it had vigour and grew up and out. After a night of Ben lying on his back, his hair would sit straight up like the frill of a triceratops and resist all efforts to be flattened. He didn’t need a haircut for a while but I watched the volume rise and the sideburns return, slightly darker, courser. When it came time for a haircut his hairdresser would not only need to contend with Ben’s near constant movement but now also the scars on his scalp. I was delighted to have his full head of hair back, but wondered how long we could manage it being cut. He hated being held still but it’s risky to have a pair of sharp scissors next to an unpredictable head. I wondered if the close crop would need to become more frequent.

It came time to find a new hairdresser and through a friend whose daughter also found it hard to keep still we found C. She also visited us at home and we would set Ben up at the dining table with a programme to watch and the headrest of his chair removed behind. C is fast and she found a way to dance her scissors around the ever moving target. Her speed meant there wasn’t time for Ben to get too frustrated or annoyed. I clamped his head still for the short buzz of clippers around his ears, but otherwise he wobbled and she coped.

When C visited this weekend she reigned in Ben’s sideburns and commented on how his hair has changed. Four years after the shaved head, the contours of the scars are invisible beneath his thick hair and the dinosaur frill is less pronounced. Some of the floppiness has returned. I trust C’s skill with her scissors and I paid little attention, chatting and making tea because I don’t need to be right there holding his head.

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Then it was Molly’s turn to watch her programme and get her hair dramatically chopped after she requested hair more like her brothers. She no longer wanted the soft, light, long curls that she’s had for the last few years and which I later swept into the bin. She now has darker, shorter hair. Not exactly like her brothers, because in the same sentence as asking for short hair she said she also wanted to look like Elsa so I was worried she didn’t understand the long term implications of a hair cut, but closer.

I’m disconcerted by her new bob – she looks older and I have to admit she is no longer a baby – but she just wanted less hair. It’s not the precursor to surgery, it won’t take four years to recover, she just wants hair a bit more like Ben. It’ll grow back.

Son Stories by Jessica Moxham

Stories about our son Ben, his siblings and our family. Ben is 12, loves stories and is disabled. I am learning to be his ally.

Month: November 2019

The Tale of the Token

Haircuts