Home General Info & Awareness 7 Hidden Expenses of Having A Disability

7 Hidden Expenses of Having A Disability

by InvisiblyMe
A picture of a purse open with money spilling out, and underneath the title of the post.

Today I’m excited to be able to share with you a guest post from the lovely Gemma at Wheelescapades as part of our blog post swap. She has done an incredible job with this post, which is as humorous as it is informative and eye-opening. Enjoy!

Being disabled can become quite an expensive lifestyle, because that’s what it is, a way of life. Just not chosen. 

The problem is that people with disabilities have extra costs of living that people without disabilities do not have, and do not consider. 

1. Having An Extra Human

One of the biggest hidden cost of having a disability for myself is having an extra person around. I hadn’t really thought about it in depth until writing this.

The recruiting and paying them is a matter in itself and often budgets are provided for this dependent on needs and income. Aside from this there are added costs that may seem trivial yet over time can add up to quite a bit. 

Having a PA/carer always present is a bit like having a double. They may be my arms and legs, but they are also a whole other human. 

There is an extra person in my house almost 24/7. That’s an extra tea drinker, milk user, toilet flusher, kettle boiler, toilet roll wiper, hand soap squirter, tv watcher and water user. 

Ok so I’m often watching the tv at the same time, but not at night. I sleep at night. I’m only part vampire. 

Four nights out of seven I have a ‘waking night’ PA. A stalker that sits in my lounge watching Netflix (other streaming services are available but not so good) waiting for me to shout help. Not literally. This person needs heat, light, drinks and entertainment. They bring their own lunch, snacks and juice. But it only seems polite to provide hot drink facilities, a light and working WiFi. The days when broadband wasn’t unlimited I often had higher bills and had to up my allowance. 

2. Paying For Proof To Prove I Don’t Have To Pay

I think many are under the assumption that disabled people get everything thrown at them for free. 

This is not the case.

Yes there are cost reductions, carer tickets and opportunities for free parking, but it’s not all as fun and easy as it sounds. Many of these have to be applied for, some of which entails an added fee. 

CEA Card

This is a national scheme developed for UK cinemas by the UK Cinema Association. It is a card with your details and photo on that enables you to get a complimentary companion ticket when seeing a film. To apply you’ll need to prove you have a disability and pay £6. This is admin costs for producing the card, and £6 may sound like a bargain for a years worth of free tickets. It is if you use it regularly, but those are carer tickets people need to be able to physically and safely watch a film. 

Nimbus Access Card

Another card that proves disability. This one is more specific to your needs, allowing the venue to process what requirements you have when ordering tickets. In theory the system will know if you need a carer, a hearing loop, can’t walk far, stay in your wheelchair, etc. 

I don’t have one myself because I have never been asked to show one. At £15 for a 3 year ‘subscription’ it’s currently unnecessary to me. 

A friend of mine got applied for one when booking tickets for a concert, as this was requirement for disability proof. She hasn’t needed to use it since.

This could be a brilliant scheme, and when it becomes general use I may look into it. But until I need one regularly, it’s an unnecessary extra cost. 

Blue Badge

The supposed holy grail of parking. A Blue Badge can cost up to £10 in England, £20 in Scotland, and is free in Wales. Don’t ask me why the huge difference.

Not a bad price if it means you can park wherever you want, whenever you want. But you can’t. 

Although some carparks offer a BOGOF (buy one hour get one hour free) deal to those with Blue Badges, many carparks are charged at the full amount for all.

A blue square with the person in a wheelchair disability icon in white.

It can take a little longer for me on a day out shopping than for some. Not just the numerous coffee shop stops. Finding an accessible loo can be a mission, as can a reachable table is a restaurant. Winding through people, driving over cobbles and going the long way round to find a dropped kerb all slow me down. So parking hours soon add up.  

You can park on double yellows most places for 3 hours (unless there’s yellows on the pavement too, then you can’t). It’s not always practical though when you have a large vehicle and need access to the rear end. Even with my warning sticker people still park right behind, stopping me accessing my ramp. 

The priority spots close to stores and a bonus though. I’m not complaining. 

You’ll also need a stunning headshot passport style photo for all of these things!

3. Gadgets

The obvious are wheelchairs, hoists, and other medical equipment that are mostly funded by local authorities or the NHS. However as I’ve spoken about before, finding the right wheelchair can be difficult. Everyone’s needs and lifestyle is different, if the standard NHS supply doesn’t suit you, you may be required to pay extra or find your own equipment completely.

There’s also the little things. Daily life gadgets and particulars.

I use specific cutlery and cups. These aren’t specifically made for me, or for people with disabilities, they’re just ones I find easier that work for me. I need them to be lightweight, not too chunky. Nice and sharp too, so less pressure is needed. Don’t worry I have good hand control! Mostly.

When my mugs break I can’t just use another or buy any ones available. This means I often stock up or end up buying more expensive ones when I see them.

Owning a portable ramp allows me more freedom but at another added cost. Depending on what you need these can range from £50 to well into the hundreds. It may not be my responsibility to provide myself access to venues, and I don’t often take my ramp to public places. But when that’s the only option, it’s something.

Mostly I’ll use it when visiting family and friends, because why build accessible houses (eye roll).

4. Bills

Staying in the much same position all day means I get cold. Even in summer I rarely go a night without multiple hot water bottles keeping me cozy. My heating is likely set higher than most, and I have a heated throw that hasn’t had a day off since I got it for Christmas (other than when I was in hospital with flu and it got a little break). 

My bedroom is almost that of a hospital. Function not decor thankfully. I have a profile electric bed and air flow pressure relief mattress, both of which are plugged in and turned on at all times. During the night I am attached to a feeding machine and breathing ventilator. Yes I’m part robot. 

A pink piggybank with a totally white background, with a few coins spread around it.

That along with charging my wheelchair and hoist every night, you can just imagine the electricity I alone use. Without the rest of my household and the constant extra human I have.

Those with disabilities are statistically at home more, be it due to working from home, regular illness, or accessibility. Utility bills are therefor likely to be higher. 

5. Activities

Not being able to drive myself means that I rely on a chauffeur (PA, friend or family member) to take me anywhere I need to go. I can also not grab a lift, meaning it’s always my vehicle that’s used.

As well as wear and tear, I have to pay an extortionate amount on insurance because I don’t know who will be driving me. I insure my WAV (wheelchair accessible vehicle) for any driver over the age of 25. This restricts who I can employ, but if I lowered that age my insurance would shoot up more.

Most people attending a show or event get a choice of where they sit. You might be lucky enough to grab a ‘cheap seat’ with slight restricted view, or a last minute sale purchase to fill the theatre

A photo taken inside a theatre, looking from the front up to the back and showing the rows of seats. Lights twinkle from the ceiling. All seats are empty, but further towards the back you can just see Gemma in her wheelchair, showing how she has limited options when it comes to things like seating in a theatre.

This isn’t possible if you have specific needs. Staying seated in my wheelchair (I cannot get out without a hoist) means that there are very limited options of where I can sit. These tend to be on ground level and with a good view, which is great. But often comes in the higher price range. Chances of grabbing a resale or last minute ticket are slim due to needing one of very few seats. 

If I want to attend a show I generally have to book the minute ticket sales open. There’s no waiting for payday.

Many venues and events now offer a complimentary companion ticket for those with disabilities that cannot attend a gig without support. This is great and has reduced the amount of situations where I have to pay extra to be accompanied. Proof is required, a DLA or PIP letter usually, so that the scheme isn’t abused. 

There are still many cases where I’m penalised for needing assistance.

For example a local theme park to me only offer a slight reduction on entry tickets for people with disabilities and again only a reduction on the carer ticket. As you can imagine I don’t get much out of your average theme park. I do have nieces and friends though, and still like to have days out with them, watching their terrified faces.

When attending the theme park in question (Pleasurewood Hills), I paid more for mine and a PA ticket, than all other members of my group. That went on every single ride. 

I’ve also attended an Escape Room, Christmas Fayre and circus that all charged for PA/carers.

6. Holidays

When going to Center Parcs for a girls weekend a couple of years back I had to pay for a larger lodge to accommodate the PA/carers I needed to take with me. It being a long weekend and at times me needing two people to assist and them also needing sleep or time out, meant that my share of the lodge was three times that of what my friends paid.

Train and plane travel doesn’t often offer a concession price. Although you can get a disabled rain card, having an extra person again costs me more.

While on holiday my disability doesn’t just disappear, I still need all the extra equipment to keep me comfortable.

I hire a hoist and mattress whenever I stay anywhere that isn’t my home, as taking mine with me isn’t practical. Plus I have enough to take already, I’d need a train carriage just for me!

That package holiday or last minute deal isn’t something I can snap up for a saving either. My needs don’t fit into a package, and almost nothing can be last minute for me.

Tailored accessible holidays also seem to come with a high price. As does anything titled ‘Disability’. 

7. Medical costs

I am forever grateful to the NHS. Throughout my life I have relied on them for lifesaving treatment, procedures, medication and equipment. I literally wouldn’t be here now.

There are other medicinal costs though that cannot be provided free of charge.

Massages, physio, specialist gym equipment use, swimming and holistic therapies can help to relieve pressure and pain, relaxing muscles and keeping people mobile. These don’t come under necessary healthcare and therefore can come at quite a high cost.

Attending regular clinics, hospital appointments and emergency stays all adds up too. There’s the travel, refreshments, parking, and have you seen the price of TV subscriptions in hospital?!

The hidden expenses of disability could go on. Time is a form of currency. Time is money, as they say. And disability takes up a lot of time. Precious time. But that’s for another day. 

Find Gemma …

Wheelescapades Blog / Twitter / Facebook / Instagram / Pinterest

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A huge thank you to Gemma for being part of the blog post swap. I hope you enjoyed her post and that it can provide a little insight into the hidden expenses that can come with disability.

Caz  ♥

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Kirsty June 8, 2020 - 4:36 pm

I hadn’t considered some of these, but it definitely all adds up. Not to mention time – that’s a big one too – time and effort that goes into planning, or to finding solutions to inaccessible things that we encounter in our day-to-day lives.

InvisiblyMe June 9, 2020 - 3:14 pm

I agree, there are a lot of instances of hidden expenses with different conditions we’d probably never think of until or unless we learn it from someone else or experience it for ourselves. Thanks for the comment lovely xx

gemmaorton August 9, 2020 - 5:58 pm

Oh absolutely time is probably the most costly! Organising and applying for all of the above, but also planning almost every aspect of my day.

Terri, Reclaiming HOPE June 8, 2020 - 6:41 pm

I love the idea of the blog post swap Caz! This was an eye-opening article – you never really realize how much the so-called ‘small things’ add up until you’re the one having to pay for them. And then, of course, you have the big things, such as the medical costs, that may not be covered by insurance. Thanks to Gemma for the education!

InvisiblyMe June 9, 2020 - 3:18 pm

I’m glad you found it eye-opening, too. We all have our own experiences with chronic illness and associated expenses, and different conditions will likely elicit different sorts of costs; it’s good to get a personal perspective from someone else about their experience, even though it’s pretty sad when you think of how additional expenses unfairly add up. Thanks for the comment, Terri. Would you ever want to do a blog post swap? If you would I would absolutely LOVE that! ???? xx

Jay June 8, 2020 - 6:36 pm

Some of these I don’t even think about but of course they all apply, and more besides. I’ve gotten used to paying a premium because my safety and comfort are worth it, but wouldn’t it be nice if basic things like safety applied to everyone regardless of cost?

InvisiblyMe June 9, 2020 - 3:16 pm

It’s pretty harsh when you think about it, that safety and comfort come at a premium rather than as standard. It’s not like anything is really ‘cheap’ to begin with! xx

John Rieber June 8, 2020 - 7:07 pm

Thanks for sharing this – as I’m lucky enough that I do not have to live with a disability, this is important information for me to read and understand….thank you again

InvisiblyMe June 9, 2020 - 3:15 pm

It’s quite illuminating to see another point of view from someone’s personal experiences, isn’t it? Glad you liked the post, John, thanks for commenting. I hope your week’s going well so far! xx

Marie Clancy June 8, 2020 - 10:16 pm

There is so much I hadn’t even considered Caz. Great post and blog swap idea!

InvisiblyMe June 9, 2020 - 3:26 pm

It’s quite an eye-opener, isn’t it? Thanks, Marie, I’m glad you liked the post – I think Gemma did a fab job with it! As for the blog swap, would you ever want to do that? I’d be very open to it if ever you would, I’d love to feature you on here and swap posts. xx

Rachael Emma Tomlinson June 8, 2020 - 10:21 pm

People don’t appreciate this side of disability/illness sadly, I did a similar post a few months ago to highlight it, thank Gemma for sharing x

InvisiblyMe June 9, 2020 - 3:34 pm

You’re right, it’s an under-appreciated aspect of chronic illness/disability life so posts like yours and the one Gemma’s shared are so important to bringing a little awareness to it. Thanks for the comment, Rachael! xx

gemmaorton August 9, 2020 - 6:00 pm

I think it’s something many people don’t think about unless they experience it.

Laura Beth June 9, 2020 - 3:03 pm

Thank you for sharing! Every point that was made makes sense to me, but there was also things I didn’t realize. Thanks for educating me.

InvisiblyMe June 9, 2020 - 3:35 pm

I’m glad it was an illuminating post, Gemma did a brilliant job of covering some of the additional expenses that can be incurred and I imagine there will be a lot of people who wouldn’t have considered at least a few of these aspects. Thanks for the comment, Laura! xx

K E Garland June 9, 2020 - 5:25 pm

I didn’t realize you had a person there with you, like a home healthcare worker? That’s what they’re called here.

InvisiblyMe June 11, 2020 - 3:35 pm

This is Gemma’s post, but I’ll just chip in here to say that some people do have, either through government social care or private care, a worker to help at home, yes ???? x

gemmaorton August 9, 2020 - 6:03 pm

Hi, yes it’s like a healthcare worker but we call them Personal Care Assistants, because they assist in every part of my day to day life. From care needs, making food, driving my car, coming shopping. They are basically my arms and legs. Their wages are funded by the NHS, but the added costs of them accompanying me are paid by myself.

Lauren June 9, 2020 - 5:34 pm

I didn’t realise you had to pay for things to prove you don’t have to pay. What an extra added expense. It’s important for others to know about what others have to pay out for. Thank you for sharing.

InvisiblyMe June 11, 2020 - 3:34 pm

It’s pretty ironic to pay for proof you don’t have to pay, isn’t it? It’s definitely eye-opening to see the types of additional expenses that may be accrued. Thanks for reading, Lauren! xx

Smitha June 12, 2020 - 6:01 pm

Thank you for sharing these with us. Its not pretty to even think about all the added costs but needed for some of us who have absolutely no idea what it means. I never look at the disability parking as before.

InvisiblyMe June 14, 2020 - 4:47 pm

It’s quite eye-opening, isn’t it? Gemma did brilliantly with this post, so I’m glad you liked it and found it introduced you to some new points on the hidden costs side of things. Thanks for the comment lovely xx

Despite Pain June 14, 2020 - 11:32 am

What a fabulous post from Gemma. Eye-opening, but as usual, she explains everything with humour. (I love Gemma’s blog for that reason)
Many of the things she’s mentioned, I really hadn’t thought about before like all the small extra costs of having that extra person in your house every day. They all add up. And the car insurance to cover any driver!! That just feels unfair, doesn’t it?

InvisiblyMe June 14, 2020 - 4:50 pm

I love her sense of humour, too! It really does seem unfair to add another burden of financial costs at every turn. There’s a lot to consider and I think Gemma did brilliantly at highlighting the aspects many wouldn’t necessarily have considered before. Thanks for the great comment, Liz.xx

gemmaorton August 9, 2020 - 6:05 pm

We have to laugh about these things or they’ll just get too much and break us down. I’m glad you enjoy the humour though. That’s my aim ???? thanks for reading.

Eliza June 14, 2020 - 3:24 pm

It’s just sad how hard it is and how much it costs…. just to live… and when you can’t earn, either.

InvisiblyMe June 14, 2020 - 4:57 pm

That’s the kicker, isn’t it? You’re less likely to have the adequate income in the first place, then get stuck with added costs. It’s another layer of stress and pressure that just isn’t needed on top of disability. xx

Glynis Jolly June 27, 2020 - 4:23 pm

I’ve been disabled for over 40 years. I’m taken aback by all the expenses you have. Living in the U.S., I would think I’d be the one with more expenses because there isn’t socialized medicine or other helps for the citizens. I do need the extra person, but it’s only because I can’t ride a stick-shift. I need an automatic that has power brakes and power steering. I luck out with my extra human. He’s my husband, so I don’t pay a cent for him. We do have the blue tags for the cars, and they cost US$15 each year, which gives me the right to park closer to building. I don’t need any other proof of disability. Medicine costs where you’re disabled or not and many people are taking pills of one sort or another, so I don’t count that as an extra expense.

InvisiblyMe June 29, 2020 - 3:30 pm

It’s interesting to get an insight into how things work in the US, and how the two compare. I wondered whether you have disabled parking or similar, so that’s the blue tag you pay for each year, right? I’m glad you’ve got that as it can be helpful, just one less thing to have to worry about at least. We also pay for medications unless someone has an exemption certificate, and the price per item is £9.15 ($11.23), so if you have a few items at a time it really adds up. As extra humans go, your hubby sounds like a good one to have, and free like you say! ???? Thanks for sharing this, Glynis. Take good care of yourself and stay safe.xx


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