Ataxia and us Our Accessibility Stories

Wheelchair Rugby- a trying experience!

A few weeks ago, Dan went to try wheelchair rugby at a session in Birmingham. I wasn’t sure that I wanted to write about this experience (because it was upsetting for Dan, and me too), but I’ve decided I should. It’s an account of a real day in our lives, and it highlights some of the issues I’m trying to talk about in my blogs; the ones that are perhaps harder to write/ read about, but are important. I am fighting the urge to chicken out of writing about the bad stuff, because I know my blog is supposed to be real, honest and raw.

When Dan found out about a local wheelchair rugby group, he was really keen to get involved. The prospect of being able to play a team-sport again, keep fit, and have fun, was an exciting one. Maybe he’d even end up with a new hobby? Dan got in touch with the organisers- they were really helpful, and invited him to go and give it a try. So a couple of weeks later, we planned to go along to one of the sessions.

Dan knew that because of his coordination problems, he probably wouldn’t be able to catch the ball very well. However, he’s got good upper body strength, so thought he’d be good at defending/ blocking. Dan told me that he wouldn’t have had the confidence to go and try something like this a while ago, and would’ve come up with any excuse to get out of it on the day. Apparently, being with me made him much less nervous, and gave him more confidence to try things. Obviously, that made me beam. Although we hardly knew anything about wheelchair rugby, we were both looking forward to the day.

It turned out, that instead of the other players, Dan just ended up tackling his own emotions, thoughts and physical limitations.

On the morning, as we were leaving and Dan was putting his wheelchair into the car, we hit our first problem. As he lifted the chair into the boot, his rucksack strap got caught around the valve of his tyre. The valve ripped off the inner tube, and within seconds the tyre was flat. Although I’m a bit of a stress-head over little things, I tend to cope better with actual, bigger problems. Whilst understandably, Dan was really annoyed, I tried to get him to stay calm. We had his off-road wheels in the car, so I just said we’d have to temporarily put those onto his wheelchair. Those wheels are really just for using with his electric attachment- they’re not designed to be used when self-propelling a manual chair. This meant that it’d be much harder for Dan to move the wheelchair himself, and that I’d need to push him. With that independence taken away from him, and worrying about getting his tyre fixed on a Sunday, his mood wasn’t great.

We got to the venue, and had a look at Dan’s tyre. When we realised there was no fixing it, I took the wheels off, and put the off-road ones on. Next problem: Dan knocked a cut on his hand, which was bleeding quite a lot and didn’t want to stop- which I’m guessing was because at this point, his blood pressure was probably somewhat high! Injured hands are quite common with manual wheelchair users, because when squeezing through door frames and gaps, it’s not uncommon to hit and scrape your hands/ knuckles. With me trying my best to stay upbeat and keep Dan positive, we made our way into the venue. When we got into the sports hall, we had to ask for a first aid kit so we could sort out his hand. First aid kit found, and plaster on, it was time to get started.

We were introduced to the other people there (mostly regular players) and then Dan had to find a wheelchair that suited him. The adapted wheelchairs that are used, were all provided and there was a variety of sizes, and some slightly different shapes. I helped Dan to get into a couple to try them, and he settled on one he found the most comfortable. Due to the nature of the sport, the players’ feet have to be behind a guard that’s built into the wheelchair, but it wasn’t easy for Dan to find a great position. Being over 6ft tall, Dan has pretty long legs, which proved to be the challenging part of getting settled and comfortable into one of these chairs.

Finally ready to give it a go…

Anyway, once he’d chosen a wheelchair, he got started. The session began with a warm-up. I looked on, sat with the partner of another player (who was lovely). The warm-up involved weaving in and out of some cones, in different directions, and then doing some stuff backwards. I could see that Dan was struggling to propel the chair and to keep up with everyone else.

The condition that Dan has, Friedreich’s Ataxia, causes a range of mobility problems, including jerky movements, and difficulty with coordination. The wheelchairs used in the game have a much tighter turning circle than a normal wheelchair, and are therefore more sensitive- we hadn’t really accounted for that before we went. Also, so that there’s no risk of breaking fingers by getting them caught in the spokes, the wheels don’t have grab rails and are covered with guards. The guards are basically large, round, solid discs. To push the chair, you have to use your palms to grip onto the wheel guards, with your thumb positioned resting at the top of the wheel.

I could see that Dan was getting frustrated. He wasn’t managing to pick up any speed. His coordination problems meant he was either missing the wheels completely, or was pushing each side at different times. Not pushing the wheels at the same time, obviously meant he was struggling to direct the chair where he wanted to, and it was making unwanted turns to the left and right.

The tipping point…

After that part of the warm-up, the coach asked everyone to make a circle. Then, they started passing the ball at each other across the circle. This is where I felt a bit of dread for Dan. Catching- we already knew that this would be hard. As we’d expected, Dan’s reflexes, reaction times, and coordination didn’t accommodate catching a ball. He looked so defeated, upset, and just awkward. I was finding it increasingly difficult to watch and was becoming upset myself. Dan soon slid out of the group and came over to me. I asked if he wanted to go, and he just nodded. The coach walked over and Dan told him that we were going; he told him that he just didn’t have the skills needed and was just getting worked up. Understandingly, the coach thanked Dan for coming, gave him a few kind words, and then we left.

As soon as we got out of the door, Dan welled up. And before I knew it, I was crying too. Dan didn’t really say much as we went back to the car. All I could do was hug him. I tried to tell him it didn’t matter, but I knew it was a crappy situation and that nothing I said would change that. We started to talk a bit. I said “At least you gave it a go” and tried to help him feel better. I told him that not being able to play wheelchair rugby didn’t make him any less wonderful. I also told him that I’ve tried loads of things I’ve not been very good at, as have most people at some point. But, that’s so different to the situation Dan was in, and I knew that.

I can’t even imagine what it feels like, and that’s what I said to Dan. Balance, coordination, and fine motor movements are things that most of us take for granted. Most people don’t have to consciously think about these things. We don’t have to concentrate on not falling over when we stand up- our balance comes naturally. We don’t have to think about every foot placement when we walk- we just get up and do it. We don’t have to allow extra time for things like buttoning a shirt, or ask someone else to do it- it’s a part of our routine that requires little to no real thought. Having these abilities gradually stripped from you is unimaginably horrible.

FA is a cruel condition, and that’s what the experience reminded Dan of. Dan used to play football, and skateboard, and climb trees. And on that Sunday morning, the experience had made him think about all the things he could no longer do. It was emotional, and I just wished I could do or say something to make it all better.

Trying to re-inflate the flat tyre… and Dan!

On our way home, we went to a bike shop to try to get Dan’s tyre sorted. A wheelchair wheel doesn’t take a common tyre/ inner tube size, so we couldn’t get it fixed (more bloody frustration). However, while we were in there, I did have a ‘classic me’ moment which lightened the mood and made us giggle. There was a row of about twelve bikes on a display platform, and I went to have a look at them while we were in there. I was admiring a pastel green bike, with a basket on the front, and turned the handlebars to look at the silver bell that was attached. The front wheel of the bike turned and clipped the bike next to it. This triggered an embarrassingly loud rally of ‘bike dominoes’. One by one, the bikes tipped and knocked into each other, until all of them were on the floor. The last one in the line dropped off the edge of the platform, knocking a load of boxes off the end and knocking over a sign. I was horrified, and looked at Dan, who was helpfully laughing and shaking his head at me. After a member of staff and me had untangled the bikes and stood them all back up (with me awkwardly apologising approx every 5 seconds), we called it a day and came home. At least Dan wasn’t the only one that had turned a bright shade of magenta that morning!

For the rest of the day we chilled out under a blanket on the sofa, and watched TV. Dan started to feel a bit better about things and we had a good chat. He said that he wouldn’t be going to wheelchair rugby again and I supported his decision. For me, the fact that he didn’t enjoy it was enough of a reason for him not to go again. He didn’t have to justify why, or explain anything. Just the same as if I went to try ‘able-bodied’ rugby (funny image!) and decided I didn’t want to take it up.

Rubbing salt in the wounds…

Not the wounds on his hands. And not actual salt.

What then added insult to injury, were some messages that Dan got. They came just as he was starting to feel better about the situation. And they irritated me. A lot. I’ve had to ask myself whether I’m overreacting or not, and I’ve concluded that I don’t think I am! The messages reenforced all the negative feelings and thoughts that Dan had after his experience. What makes it worse, is that these messages were from someone else who also has a disability. Therefore, you’d expect them to be more understanding- someone who ‘gets it’ and who you can talk to without feeling judged. Although not directly mean or rude, the messages were unhelpful, pressuring, demoralising, and felt like an under-hand personal attack on Dan’s character. I understand that they may have been well meaning, but I really feel that I need to point out why there weren’t ok, and why they made Dan beat himself up even more.

So what the messages said, and my responses:

  • In the first few lines, this person mentions ‘giving up’ twice. I can assure you, that Dan is one of the most determined and stubborn people I know. He wasn’t giving up. He was admitting that his condition doesn’t lend itself well to the sport, and that he found it even more challenging than he’d anticipated. Dan had nothing to prove. He was giving rugby a go for himself, and nobody else. He’s not giving up. He certainly doesn’t need to try harder to meet some unrealistic expectations set by a stranger.
  • “Do you workout at the gym? That will help you. Build up your strength to push the chair” Ok, so I’m not sure why it was assumed that Dan wasn’t strong enough. Trust me, his biceps are great (and I should know- I’ve spent enough time admiring them!). He doesn’t need to workout more than he already does, be fitter, or stronger- all to play a sport that he doesn’t enjoy.

The next comment…

“you will get there if you put your mind to it”.

  • There’s no cure for FA. Unfortunately, ‘putting his mind to it’ is not going to reverse the degeneration of his nerves and restore his balance and coordination.
  • Oh, and just for good measure, at the end of the message, they told him yet again not to give up.
  • In the final message, they compared Dan to ‘someone else they used to know with the condition’ who didn’t give up. Seriously. Stop.

He tried to explain that the problems are caused by his condition and won’t get much better. Even if he tried really bloody hard every weekend, he wouldn’t get a result that’d make him feel that the effort and frustration was worthwhile. He simply didn’t have a good time there- it was never going to be a new hobby. And when you have a degenerative condition, why on earth would you waste the time you have, by voluntarily doing something that you really don’t enjoy?!

The impact…

Positively encouraging other people is a great thing! Most of us appreciate it when someone believes in us and gives us a boost. But when Dan openly and honestly explained the situation, and let this person know how his condition effects him, and they still argued the toss, it wasn’t having a positive impact. He was having to tell someone that this utterly horrible, degenerative condition, was stopping him from doing another thing that he wanted to do- something he’d hoped he could have fun with. That’s a hard thing to admit to yourself, and to come to terms with. So, saying it ‘out-loud’ to someone else is even harder.

After the messages, Dan started doubting himself. He started doubting his mindset. He was worrying that he wasn’t determined enough, strong enough, good enough. I had to remind him that he’s not weak and that his condition doesn’t define him, even if it stops him from doing some things. Nobody thought any less of him, and his wheelchair-rugby-playing-abilities weren’t important. He has far more ABILITIES than disABILITIES.

We haven’t shared these messages because we’re holding onto any negativity, or because we are angry towards the person who sent them. I’ve included them in this blog, just to highlight the feelings and difficulties that people with disabilities often face. They show the general attitude towards disabilities and the lack of understanding of people’s conditions. Hopefully they’ll just serve as an example of things that you maybe shouldn’t say, and why. It can only be a good thing if it makes people more aware of the impact that their words can have.

Within a couple of days, Dan was feeling much better about it, and was back to his funny, bright, positive self. Thankfully, we have loads of amazing, memorable and wonderful experiences, and very few that are as disappointing and deflating as this one. I’m looking forward to writing about one of these for my next blog!

Love,

Becky. X

To read about some of our better experiences in my previous blogs…

Click here to read my top 5 reasons why dating someone with a disability is great!

And click here to read about one of our much more successful and positive ventures, Zip World.

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1 Comment

  1. Most people find it hard to come to terms with declining abilities and still living a satisfying life even though possibilities are reducing. Need to show ’em!

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