Dan using the batec attachment for his manual wheelchair. There is a large wheel at the front of his wheelchair and handles like on a bike.
Ataxia and us

Disability doesn’t mean NO ability!

Disability doesn’t mean NO ability! – Dispelling myths

Note: This article contains some sensitive content and some strong(ish) language!

Since being with Dan, I’ve been surprised at the number of things that many people assume he can and can’t do. I want to help people to understand that having a disability doesn’t mean that someone has NO abilities! So, from driving and working, to sex and gigs, I want to let people know how disability affects Dan and our lives together.

There is no mould or template for disability. There’s no textbook that sets out someone’s capabilities, based on their disability. We all have our own, unique abilities, skills and talents. Our bodies all respond slightly differently to the same circumstances/ conditions.

There’s a lot of things that I can’t do that other people can, and vice versa. Being ‘able-bodied’ doesn’t automatically mean that you should be capable of doing everything that someone else without a disability can do. Likewise, no two wheelchair users, or two people with the same condition, have exactly the same capabilities and needs.

Dan’s condition, Friedreich’s Ataxia (FA) has a number of symptoms and complications. Not all of these appear in each person, and their severity varies between individuals. Whilst all those with the condition will experience some degree of ataxia (loss of co-ordination/ balance), complications such as type 1 diabetes do not affect everyone with FA.

So… onto the first myth…

Driving

“You can’t be that disabled if you can drive!”

Yes, this is genuinely a comment that I’ve heard about a wheelchair user driving a car. I’ve also been with Dan when someone commented “Oh, I didn’t realise you were in a wheelchair- I thought I’d just seen you driving…?!” And it seems to be a regular misconception that by default, a wheelchair user can’t drive. Maybe this stems from the surprisingly common thought that everyone in a wheelchair is completely paralysed or has no use of their legs? Even so, it’s now possible for people to drive without needing their legs and feet for the pedals.

Comment from forum: "Between a rock and a hard place here. You complain about being 'disabled' but you can still drive a car? Has he reported his 'disabilities' to the DVLA?"

Whilst some people mention it because they’re genuinely curious, there are others who aren’t so well-meaning. Comments like those above, are often made by people who are simply insinuating that someone with a disability who can drive a car, is faking their condition. Well, it may shock some people to know, that not only can people with disabilities actually leave the four walls of their home, a lot can also drive!

So… how does Dan drive? Due to the loss of sensation and lack of coordination in his legs, he has a specially adapted car, fitted with hand controls. He controls the accelerator and brake with one arm, using a sort of lever-mechanism. To accelerate, he pulls the lever, and to brake, he pushes it. He steers with the other hand (using a rotating, ball-type handle attached to the steering wheel). Clever, I know. But personally, I still think the car’s best feature is the heated seats.

Getting in and out of the car is slightly easier if Dan has an extra pair of hands to help, but he does manage doing it on his own. Once he’s stood up, he uses the rails on the roof of the car to steady himself. He can then lift his wheelchair into the boot using his free arm, and edge his way along to get into the driver’s seat. Having an adapted car gives Dan a huge amount of freedom and independence. It also allows me to be a really annoying back-seat driver for my other half. I’m sure a lot of people can sympathise with Dan on that one…

The view from the driver's seat in Dan's car (showing the hand controls). There is a chunky lever on the right of the steering wheel, and a grey palm-sized ball on the wheel for steering.
Inside Dan’s car. The black lever w/ the grey handle at the bottom-right of the steering wheel is the accelerator/ brake control. Attached to the wheel (left) is the rotating handle/ knob.

Working

I don’t know why, but there are people who seem to think that nobody who uses a wheelchair works or earns a living. Is this maybe because in a lot of people’s minds, disability translates to no-ability? Or, is it because there are people who give an entire demographic a bad name? There a lot of people who could work, but choose not to, blaming it on their illness and deceitfully claiming benefits. I realise that’s a controversial comment, so feel like I need to back it up with some substance. Between 2017 and 2018, a whopping £120million of Personal Independence Payment was paid to people who were later found to be claiming it fraudulently. To see the full, official government report on that, click here.

Unfortunately, I know of at least two people who are deliberately exaggerating their illness in order to claim benefits that they shouldn’t be entitled to. And what really boils my piss, is that there are so many genuine claims refused all the time. When Dan was first diagnosed with the shitty, degenerative condition FA, he was told he wouldn’t be entitled to any sort of financial help.

Anyway, now I’ve got that out of my system… back to Dan. So, he does work- full time. He’s a data analyst for a telecoms company. I still don’t 100% understand what he actually does, but it looks very complicated. All I know, is that you have to be bloody clever to do his job. Dan works most of his days from home, and when I see his computer screens, there’s a lot of numbers, codes and colour systems. Basically, a lot of gobbledygook that he somehow manages to make sense of.

At the beginning of his time working for this company ten years ago, Dan hadn’t had his diagnosis. His physical abilities were important for his role back then- he was in an engineering position. It was actually at work, whilst trying to climb a ladder, that Dan noticed something wasn’t right. Although going up telegraph poles and crouching down on the pavement to deal with cables became difficult, Dan wasn’t going to be defeated. Telegraph poles are wobbly, as is Dan- not a good combination!

But, he quickly learnt a new job. It would be misleading to let people believe that he found that easy- adjusting to life with ataxia affected Dan’s confidence, and he became quite low and anxious. Now though, Dan’s attitude to the hand that he’s been dealt is extremely positive (it’s one of his qualities that attracted me to him straight away).

Going out- alone…!

Dan’s had a lot of comments over the years about going out alone. Sometimes when he’s just popped to the shop, other times when he’s been at a gig, or been out clubbing. People just can’t seem to grasp that he is capable of doing the things he does if he’s in a wheelchair. Admittedly, it’s not always easy and there are things that he can’t do. Accessibility is usually the biggest problem now, but if there’s something Dan wants to do, he’ll usually give it a go.

Once Dan had learned to cope with the psychological difficulties and had overcome those barriers, he started going out all the time- more than a lot of ‘able-bodied’ people I know. Mental health plays a huge part in everyone’s independence and how much they get out and about. Dan even feels that his mental health, and the psychological effects of ataxia, have stopped him doing more stuff than his physical symptoms ever have.

He also says that making the transition into his wheelchair gave him loads more freedom and reduced his anxiety. When Dan was still managing to walk unaided, he looked like he was drunk. Ataxia means difficulty with coordination and balance- symptoms which alcohol also causes! People stared at him more when he was walking- some people were looking because they were intrigued about what was wrong with him, others were judging the ‘pissed-up’ man wobbling around in the middle of the day. The wheelchair took away that feeling of embarrassment for him; people can tell he has a disability straight away now and don’t have to suss him out! It also took away his worry of falling over in public.

If Dan’s planning on covering quite a bit of distance somewhere, or the terrain is a bit tricky, he uses an attachment for his wheelchair. The Batec Mobility attachment basically converts his usual, manual wheelchair, into an electric trike. He also has chunky off-road wheels that he can use on the wheelchair too.

Not everyone who has a disability is fortunate enough to be able to get out and about on their own; there’s likely to come a point when it’s too difficult for Dan to do. But when he’s at the shops now and coping just fine, he doesn’t really appreciate some of the things that are said to him… “Well done for getting out of the house” and “Ooh, do you usually come out on your own?” aren’t things that need to be voiced to him whilst he’s minding his own business.

Dan using the batec attachment for his manual wheelchair. There is a large wheel at the front of his wheelchair and handles like on a bike.
Using the electric attachment on the wheelchair.

Standing up and walking

When Dan stands up and walks (well, more like wobbles), I sometimes wonder if people think of the Little Britain character, Andy?! Don’t worry… Dan’s not about to climb a tree or do a pole vault. At least not while anyone’s looking anyway.

It’s a surprisingly common misconception that everyone who is in a wheelchair is paralysed. Much like the subject of driving, many people have the opinion that if someone uses a wheelchair, but they can walk, they mustn’t really be disabled or need the wheelchair. Although Dan has reduced feeling in his legs, as well as difficulty with balance and coordination, he can still walk around at home at the moment, with aids such as his walker/ frame. He does still have falls occasionally (which you can read about here), but whilst he still can, he’s keen to walk as much as possible at home.

Finally, one of the biggest things that’s often assumed that Dan can’t do, is have sex. But, I’ve written a bit about that already, so I won’t repeat it here. Click this link to see my article: ‘Can you have sex?’ and other FAQs (warning: that piece naturally contains some sensitive content).

When Dan needs help…

As I’ve mentioned before, there are things that Dan can’t do and that he needs help with. People often struggle to know when someone with a disability might want help. There’s usually no shortage of kind offers of help from passersby when we’re out and about, though. More often than not, Dan doesn’t need the help, so politely declines the offer. Sometimes, he does need it, so he gratefully accepts. It becomes a problem though, when people presume that he requires the help, so they don’t offer or ask- they just intrude and take over. There are even times when Dan says he doesn’t need any help, but people ignore him and carry on anyway.

This ranges from people snatching things out of his hands to having people take control of his wheelchair and push him. I remember one particular incident on a weekend last summer. We’d been to a pub to relax in the beer garden by the canal. We were getting back into the car, and were folding Dan’s wheelchair down. A man who was walking past offered to help- we smiled and politely declined, but thanked him for the offer. He asked again twice, saying “Are you sure?”. Again, we told him that we were fine. He then came over and took the wheelchair from Dan (which he was using and leaning on to support himself) and put it in the boot. This very nearly ended in Dan having a nasty fall. This might seem quite harsh… but the man didn’t come across as well-meaning. He came across as overpowering and egotistical.

Dan is really appreciative of offers of help, as am I when we’re out together, so I don’t want to make us sound ungrateful. But, he doesn’t appreciate being ignored and having decisions made for him by strangers. The best relatable analogy that I can think of is this:

I’m slightly vertically challenged, at not much over 5ft. I regularly struggle while stretching to try to reach things on the high supermarket shelves, but I am more than capable of asking for help when I need it. The acceptable thing to do if you saw me struggling, would be to offer help, and then if I wanted, you’d reach the item (most likely chocolate) down off the shelf for me. What you wouldn’t do, is just appear from nowhere, pick me up and man-handle me, lifting me so that I could reach the item on the top shelf.

When someone is self-propelling their wheelchair, minding their own business, it’s not ok to take control of where there body goes by pushing them, without knowing that they want you to help. It’s taking their independence away. Even if someone does this with the best intentions, it’s frustrating for the person on the receiving end. Most people with disabilities don’t want to seem rude or alienate those who try to help, but like anyone, they also want to maintain their independence and avoid feeling embarrassed. It’s a shame, because most people who do this sort of thing are genuinely just trying to be kind. That’s partly the reason for this blog- to communicate and break down the barriers between ‘able-bodied’ people and those who have disabilities.

This is definitely the most strongly worded post I’ve written, so I promise to make the next one a bit lighter!

Wishing everyone a Happy New Year.

Love, Becky. X

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7 Comments

  1. One thing that really pisses me off is patronising comments. Not sure if Dan has used one but I use a Ross Return, when I’m too tired to use my walking frame, I had been using it for 4/5 months and a carer came round to help me with getting washed and dressed. I stood up using the standing aid and she put her hands up in the air and cheered like it was a MASSIVE triumph…

    Another thing I hate is when people think its OK to touch us just because we are in a wheelchair. Strangers regularly come up to me and touch me…theres just no need!

    I do think Dan’s car is pretty awesome!

    1. Becky270 says:

      Yep! Dan’s certainly had a lot of patronising comments. It’s frustrating isn’t it. Neither of us had heard of a Ross Return until you mentioned it here. Just had a quick google search! How useful is it? Aghh, yes. I’m not a touchy-feely person anyway; I’d hate that!

  2. Lovely blog! I am loving it!! Will be back later to read some more. I am taking your feeds also

    1. Becky270 says:

      Thank you so much!

  3. Hi there,
    You have mentioned some really good points here. My partner (36) has had ataxia sca 7 for 8 years now. The deterioration has been horrific to watch but I try my best to remain positive for both myself and him. I’m in a bad place with it all at the moment to be honest and negative comments really don’t help but I will definitely be keeping a close eye on your blogs.
    Thanks for sharing x

    1. Becky270 says:

      Hi Jodie! Nice to hear that you think there are some good points on the blog. I’m sorry to hear about your partner though, and that you’re struggling at the moment. It’s completely understandable. Watching someone you love struggle is so, so hard. I totally understand that you want to be strong for your partner, but if you are struggling, there’s no shame in talking about it. I’m sure your partner would hate to think of you being in a bad place. It’s emotionally draining and you shouldn’t feel bad that things are having an impact on you too. If you ever need to talk or vent, feel free to message me. If you’re on Instagram or Facebook, just send me a private message (@headoverwheelsx). Becky. x

  4. Becky270 says:

    Hi Sam! Ha ha! Yes Dan has a VERY grumpy and expressive face when needed! Gosh, how did you develop the transverse myelitis? My friend had it a few years ago and suffered temporary paralysis but thankfully made a recovery. Thank you for your comment. X

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