How using an electric wheelchair can be exhausting (but I still love mine)

Having a disability can mean that simply going outside your home is more taxing than for non disabled people.

There are different things which take their toll for visible and invisible disabilities but for this blog post I am going to focus on my experience as an electric wheelchair user.

I don’t want this post to put anyone off using a wheelchair, they are great for enabling freedom and independence.  Rather I just want people to think about how they treat friends, family and strangers they pass in the street.

It starts before you even leave the house…

There is the planning required before you leave.  You have to ensure your chair is charged.  I can’t unplug my charger so I have to make sure that it’s unplugged when a carer is here.

You have to think about how you are getting to wherever you’re going.  If you want to go by taxi or train you have to book that in advance.  You can’t be a spontaneous wheelchair user unless you have a car…

You have to check access in advance and often this isn’t information available online which means you have to contact the venue which can take it’s own toll.

You have to get into your chair and in my case, most of the year get into my wheelchair cosy, which is considerably more involved than just grabbing a coat and walking out.  I also have a blanket which gets tucked in around me under the wheelchair cosy as I get so cold.

If you know the area, you have to mentally run through what you know about drop kerbs, pedestrain crossings, shop entrances etc.

If you don’t know the area you have to just wait and see which can be exhausting.  You’re constantly looking for drop kerbs and half waiting to get stuck on a pavement and have to retrace your route.

And then there’s illegally parked vehicles blocking pavements or drop kerbs.  Wheely bins and recycling boxes left in the way.  Yesterday (whilst I was running late for my art class) I had the triple whammy of a blocked dropkerb, a lorry unloading onto the pavement and scaffolding.  And I was made to feel shit because I wanted to get past.

You have to make sure other people do not walk into you as they stare at their phone because then they get pissed at you.  I have had someone get annoyed with me because my chair was quiet and she didn’t hear me coming.  I wonder if she’d like me to wear a bell round my neck?

You get stuck behind people who are weaving all over the path and ignoring your polite excuse mes.  As a wheelchair user, you can’t possibly be in a hurry.

And once you’re where you’re going, you have to ask shops to get out the ramp, if they have one, or strangers to reach things off the higher shelves.  If you try and go for a coffee, you often have to get help moving chairs or carrying drinks.

If there isn’t an appropriate toilet, you mentally have to pace your fluid intake.  If there is an appropriate toilet, you have to go through the process of getting out of your wheelchair and accessories and back in again after.

You have to deal with all the comments from strangers.  “Witty” jokes, inapprioriate prying questions, being told how brave you are etc.  You have to deal with the “Does s/he take sugar” approach*.  You get stared at and pitied.  You get utterly unhelpful suggestions to cure your disability.  And offers of prayer.

You are crotch and bag height and have to avoid getting hit.

You have the perfect opportuntity to take all your belongings out with you – just load up the back of the chair – but unless you can easily get in and out of your chair, you can’t actually reach any of your stuff.

Obviously you get cold because you are sitting still and you get wet when it rains if, like me, you can’t put on your own wheelchair waterproof.  And the rain drips down the chair and down your back and onto your seat…

None of this is to say I don’t like my electric wheelchair, I love it, just be aware of all the mental and emotional energy it takes for me to leave the house.  If I say I’d rather meet you for coffee at mine than go out, it’s not because I don’t want to do that interesting thing you suggested, it’s just that sometime the task feels too great.

And this is just the wheelchair related aspects of leaving the house with a disability.  And I’ve not even touched on the coming to terms with needing a wheelchair side of things…

*People talking to the person with the wheelchair user about the wheelchair user instead the wheelchair user themselves.

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Wheelchair walks!

Firstly, I know it’s not going for a walk when I’m being pushed but going for a roll or a push sounds stupid to me. Please do suggest better alternative language though as saying I’m going for a walk makes me feel like I have to explain that I’m not actually walking… The pickles of language… 

I’ve been on a couple of woodland walks recently (which require driving to as opposed to walks round my local area) and wanted to write a bit about how they fare when you’re in a chair.

For context, because both of these required driving to, I was in my manual wheelchair and I can’t self propel at all so my carers have to push me.

Dalby forest

£8 per car, no disabled discount…  This does not endear me to them. Especially given there are limited accessible paths…

We followed the Ellerburn Red Trail which was described as being suitable for wheelchair users (actually it was the only trail I could find that was described as such and again, this makes me annoyed at the £8 fee – able bodied users have access to the entire forest for their £8 a car…).  It wasn’t too bad but the path was quite bumpy and in one part a bit overgrown and I got plants in my face…

Other than a brief bit of river, there wasn’t very much of interest on the route…

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However it does have disabled toilets (not great ones…) and a cafe.  There were also picnic benches with wheelchair spaces and a lovely man offered to sit on a wall just so I could use it (I didn’t take him up on it, that felt mean, plus I was cold and wanted to be inside…).

Moorlands nature reserve

But this, this was amazing!  There are no toilets, no cafe, parking is on the side of the road but it was free. And the path was much better, I didn’t get leaves in my face (although there were a few spiders webs instead…). There was lots more to look at and it was so quiet. I’m definitely going back with a picnic or a flask of hot chocolate (depending on the season). It’s also a lot closer to York which is important when I’m paying 45p per mile to my care agency.

I was so suprised at how accessible it was!  There was a kissing gate to get in but it was fairly big and I’ve seen a review on Euan’s Guide of someone in a mobility scooter going.  The path was mostly made of tree litter so I can imagine it might be harder to get round if it was wet.

We went round in about an hour which was a good length of time (given I tend to get care in blocks of three hours) and if we’d stopped for food or drink or whatever we could easily have been there much longer.

Dogs and bikes aren’t allowed because it disrupts the wildlife and we only saw one other group of people!

Unlike Dalby Forest, I think you could easily go back time after time and see new things each season, like the vast amount of Rhododendrons!

Wheelchair funding

I’ve talked about this before but I think it’s such an important issue it needs it’s own blog post.

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Heeby, my beautiful wheelchair, who helps me leave my flat

Wheelchair funding is hard to access.  I had to use up my savings to buy my chair.  It cost me £7000.

The NHS varies from area to area but in so many areas, as far as I can tell, you don’t get NHS funding for an electric chair if you can walk around your home. Whatever size your home is.. Which means if you live in a mansion which you can’t walk around you’d get funding but if you live in a flat like mine where ten metres is probably your maximum walk in reality, you don’t get an electric chair.

I can’t have a manual wheelchair cos I can’t self propel and I can’t have an electric wheelchair because I can walk round my home. Except, if I hadn’t bought my electric wheelchair and had attempted to walk outside a little, I wouldn’t be able to walk round my flat. I can only get round my flat because my wheelchair gets me round the rest of the world. Without my electric wheelchair I could only go to the drs (it’s literally opposite my flat). I wouldn’t make it to the shops round the corner.

And think about what that would do to me. If i couldn’t leave the house, I wouldn’t have been able to work, shop, go on day trips or do very much at all. If i couldn’t leave the house, my mental health would have deteriorated significantly, costing more in services. All medical appointments would have to be in my flat or using hospital transport which costs money.  Without a wheelchair I would have taken far far more out of the economy than I put in. So if money is your argument, it doesn’t stand up.

We should not be in the situation where I’ve blown my savings on my wheelchair, where people are having to apply to charities for wheelchair funding or where people are fundraising for their wheelchair.

Wheelchairs give us freedom. And because of this, I’ve contributed to Vicky’s fundraising efforts. Like me, she has EDS and like me, she needs to use an electric wheelchair to maintain her independence but the NHS won’t help.  It’s heartwrenching that this is the third or fourth appeal for help this year that I’ve seen on my list of people i follow on twitter.

I’d strongly encourage you to contact your local healthwatch or your MP to ask them to raise the issue of wheelchair funding criteria.  To my knowledge, there hasn’t been a satisfactory response to why so many people are stuck in a place where they get no support because they are too disabled for one option and not enough for the other.

Paying for wheelchairs

Note: This is for the UK

If you are looking for wheelchair funding, start with your local wheelchair services.  If they won’t help and you’re working, try access to work.  You will probably be required to pay a proportion of the total cost if you go down that route.  This is on the basis that you will be using the chair outside work so you pay a bit, your employer pays a bit and access to work pay a bit.

If you get enhanced mobility PIP then you can explore that route.

If none of these are suitable, you are left with grants and fundraising.  In terms of grants, turn2us.org.uk is a UK search engine for grants.  There are a lot of very small pots of money out there for very specific people or causes.  A made up but based on experience of in depth searches for clients: if your dad was a miner who played the violin and you’re a single mother you might be able to get a grant for the cost of children’s Christmas presents.  There’s also a list of possible grants over on Disability Grants.

Freedom!

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Today I got my wheels which is so much more exciting than when I passed my driving test. My new wheelchair is amazing. It’s smooth, fast, comfortable, adjustable in 101 ways, has purple rims… But most importantly it’s going to give me back some of my freedom (once the council have fitted an electric door opener so i can actually get out the building…).

HOWEVER it cost me £7000.

Until me and my sister got sick, I’d assumed that the NHS provided things like wheelchairs. How wrong was I?! Each NHS area is allowed to make up their own policy but for York, and other areas as far as I can tell, it’s ridiculous.

Can you safely self propel? No? You can’t have a manual wheelchair. Fair enough I guess, but having a transit chair would be better than no chair. At least then people could take me out.

Can you get around your home without needing a wheelchair?  Yes? Then you can’t have an electric wheelchair. Even if you also can’t have a manual chair and can’t walk outside your home.

Yes. This is the head scratching, puzzled face moment. If my shoulders and hands were better I could get a manual chair. If my legs were worse I could get an electric one. But right now, I can’t have anything.

I’ve been lucky and borrowed my sisters old electric wheelchair for six months which means I’ve been able to continue working and having some kind of a life outside my flat.  I also got given an old manual chair by one of my carers. She had it for a relative who passed away so it was no longer needed. This has meant I can go out with friends and carers on day trips, shopping, hospital appointments etc.

I was also lucky enough to inherit a little bit of money so have used up my savings to buy my electric wheelchair and a more suitable manual chair.

But I know that so many people won’t have had these resources and will be facing day after day stuck inside their home with no end in sight which is horrific.

If you’re having problems funding a wheelchair the main options seem to be Access to Work (you’ll be required to pay a proportion as will your employer) and charity grants (search http://www.turn2us.org.uk to find out what you can apply for).

If you’re concerned about the state of wheelchair services in Britain, you may like to visit Right Wheelchair and pledge your support.