Wheelchair Love UK - Early Day Essentials
I love wheelchairs! I love what they’ve made possible for me and I love sharing what I’ve learnt about them with others. I even wrote an A-Z of everything I know about wheelchairs. That post is very detailed, and it might be a bit overwhelming to someone new to using a chair, but I also hope that it’s useful.
Following some exchanges on Twitter recently with the family of a young wheelchair user, I started thinking about what information might be useful straightway, particularly the things non-wheelchair using health professionals might not know or think to say.
Before I get into the practicalities of life as a wheelchair user, a word on language, I use identity first language to describe myself, which means I say ‘disabled person’ rather than ‘person with disabilities’. For me ‘disability’ is a neutral term which describes the fact that I experience barriers because of a collective failure to think about different minds and bodies. I’ve written about this before here and here.
My understanding has been influenced by the Social Model of Disability – there’s a great video explaining this here and an easy ready guide to it here. When it comes to language around disability, I always encourage people to use factual language that doesn’t have assumptions imbedded within it – you can read more about inclusive language here.
This post is written with deep love for anyone at the start of their wheelchair journey. So, here’s my essential info for anyone with a new chair:
1. Toilets – First up is using the loo. Most people know that accessible toilets exist, what many don’t know is that in the UK lots of these are secured with a specific lock – a Radar Lock, which has a universal key. You can buy your own key online here so you don’t have to wait for someone to unlock the toilet for you. Accessible toilets are usually locked to help them stay as clean as possible. This is important because disabled people might need to touch more surfaces than others. If you use grab rails to help with transfers, check that they are sturdy and can take your weight before transferring, as they’re often installed badly. Standard accessible toilets don’t work for lots of disabled people, but there’s an enhanced standard called a Changing Place Toilet that you can learn about here. There’s also a map which shows you exactly where they’re located.
2. Physical Access – One of the things you discover quickly as a wheelchair user is how non-accessible a lot of the world is. In the UK the Equality Act 2010 is legislation that’s supposed to protect disabled people from discrimination. Within this act there’s a responsibility on anyone providing a service – shops, schools, restaurants etc to make ‘reasonable adjustments’ to ensure that disabled people can use services equally. But lots of places don’t do this, or they do it half-heartedly, and the Act isn’t inspected or enforced. Instead, it relies on disabled people having bad experiences and then taking legal action. Some resources that can be useful in helping when raising these issues include: Reasonable Access, Disability Rights UK and The Disability Law Service. Within building regulations there’s also something called Approved Document M which shares information that relates to access, like how wide doorways should be or the maximum steepness of ramps. But it doesn’t guarantee that this is always followed. Just because somewhere has a ramp, don’t automatically assume that it’s safe to use. If I’m going somewhere new I always check about wheelchair access. I’ve been told many times, “we have steps but are otherwise accessible.” Sometimes non-disabled people will suggest accessing something in a way that feels unsafe – trust your instincts and only do what feels safe and manageable for you.
3. Chair Set Up – Wheelchairs can be configured in lots of different ways, your wheelchair therapist or supplier will have suggestions about how your chair should be set up to meet your requirements, but you’re the one using it so if something isn’t working, let them know. I found that building up a knowledge of my chair preferences was really useful. For example:
• The position of the back wheels effects how stable a chair is, but also how easy it is to push – so I have mine somewhere in the middle.
• Arm rests might look like they would make a chair more comfortable, but they can get in the way when you want to propel yourself – so I got rid of mine early on.
• Solid tyres are great for avoiding punctures, but pneumatic (air) tyres can be more comfortable when it comes to going up and down kerbs or over bumpy ground, so I’ve swapped to air tyres.
I’ve had about eleven wheelchairs over the years, and each one has been set up better than the one before. This has made them increasingly joyful to use. Finding the right chair for you and your lifestyle is a process – keep learning about your chair and don’t always assume that professionals know about all the options. Wheelchairs and their accessories can be incredibly expensive, and the NHS offers a limited range compared to what’s available commercially. Many NHS wheelchair services offer a voucher or personal wheelchair budget scheme. This scheme means instead of getting an NHS wheelchair you can buy a wheelchair from a private supplier and the NHS will pay for part of it – usually up to the value of the equipment they would have issued.
Wheelchair users under 18 might find the Whizz Kidz equipment service and wheelchair clubs helpful. Working adults may be able to get a chair that helps them do their jobs through Access to Work. There’s a great guide to ATW here. A further list of charities who provide grants to disabled people can be found here.
Like with shoes, different activities call for different types of chairs. I recently did a drawing imagining what type of shoes each of my wheelchairs was most similar too.
4. Propelling – Propelling a manual wheelchair yourself can be hard even indoors. Propelling outdoors is even harder because most pavements are uneven and unpredictable. Plus, because they slope towards the road for drainage, one of your arms can end up doing more work than the other. It takes time to build up strength and confidence propelling yourself, and for some people it just isn’t possible. I can push myself in the castle but not outdoors, so I always have someone to push me. More recently I got a power attachment that turns my manual wheelchair into a powered trike.
Lots of non-wheelchair users won’t appreciate the effort it can take to move yourself about, so they might not appreciate how tiring it can be. Having someone push you is an act of trust. I have some clear rules for people who push my chair:
• Always ask before pushing me
• Tell me when you’re going to stop
• Don’t carry anything in your hands at the same time
• Never pull me backwards
• Don’t use my chair as a coat rack
Each person’s preferences will be different, but it’s always fine to have them and to assert them when you need to.
5. Leisure – Continuing to do the things you enjoy is important. Sometimes this might mean doing something in a different way or finding new ways to relax and enjoy yourself. An important stage for me was realising that independence doesn’t mean having to do everything myself. It’s about making choices and being in control of your decisions. When I have a support worker I’m way more independent than when I’m on my own or with family and friends.
In the UK, most venues will provide free companion or support worker tickets. This equalising measure (reasonable adjustment) means disabled people don’t have to pay twice to enjoy an event. Some venues may ask for evidence, which can feel quite intrusive. You can get access cards like these that confirm the provisions you require. I find them particularly useful when I need more than one support worker – for example at music festivals. If you’re in to music check out Attitude Is Everything. If you’re into sport check out Wheel Power or Activity Alliance. If you’re into art, Unlimited, Shape and Disability Arts Online are all great.
6. Aesthetics – Whether your chair is something you use every day, or less often, it’s understandable if you want it to fit with your style and character. How much of a say you have about what your chair looks like often depends on how you get it. If it’s a basic NHS chair you don’t get much choice, but if it’s through Access to Work, or you’re buying it privately, you have much more control. As well as getting confident in saying what mattered to me, I also found ways to customise my chairs, including – colourful plastic spoke covers or spoke guards like the made by Izzy Wheels.
7. Questions, Comments and Unsolicited Advice – Some people think they’re entitled to hear disabled people’s stories. It’s not uncommon for wheelchair users to be asked very intrusive questions about their bodies or circumstances. You absolutely don’t have to answer these questions. I found it helpful to talk through and plan how I’d respond to inappropriate questions with a friend.
You might also notice an increase in unsolicited advice. This can take many forms, from suggestions of miracle cures to how you should be pushing your chair or navigating a kerb. You’re also likely to hear comments like “Don’t run over my toes”, “Give us a lift” & “Do you have a licence for that thing?”. While these ‘jokes’ might seem harmless enough on their own, accumulatively they can be quite wearing.
Some people are uncomfortable talking to wheelchair users, and it’s not uncommon for people to speak to anyone you’re with rather than directly to you. I talk to my friends, family, and PAs about this in advance and ask them to either not respond or to redirect the conversation to me if this happens.
8. Pockets Are Pointless – Generally as a wheelchair user, pockets don’t work because you spend most of the time sitting on them. There are different ways to carry small items like bank cards or keys, including bags that attach to your chair like these or these, or boxes that go under your chair. Before I had bags that attached to my chair, I used a bum bag.
You might also notice that clothes are generally made for standing up in. Over time I’ve worked out the type of clothes that work for me.
9. Traveling – I’ve travelled all over the world as a wheelchair user, and there are some extra things to think about with different types of travel. There’s a government page about travel for disabled people here. You can find further info on air travel for wheelchair users here, on rail travel here and buses here. Transport for All is a great disabled-led organisation that campaigns for accessible travel in the UK.
10. Maintenance & Repairs – Wheelchairs break, screws get loose, and things fall off. If this is your main way to get about it can feel incredibly stressful when this happens. I’ve found that learning how to maintain my chairs has helped me feel calmer when things go wrong. Whizz Kidz has some great videos on taking care of your chair. How to do this depends on the model of chair you have and on how you got it. NHS Wheelchair Services usually maintain chairs that they’ve prescribed, but if you bought yours privately, maintenance is something to factor in because many private suppliers will have call out fees on top of their repair costs. I’ve sometimes found bike shops are helpful for emergency repairs. I always carry a set of allen keys with me, and cable ties have rescued me on more than one occasion too! The NHS will only ever give you one chair. I quickly realised it was useful to have a backup for when my everyday chair broke. I bought my first backup second hand from eBay. Not everyone will need a backup chair but it’s good to think ahead to what you would do if your chair broke. I have wheelchair insurance for all my non-NHS chairs. There are several companies that provide it, including the company I use, here.
These are the things I wish I’d known when I started using a wheelchair, but I’m sure there’s plenty I’ve missed. If you’re a wheelchair user with advice or tips, do share them in the comments below.
There’s no right or wrong way to feel about using a chair. The start of that journey can feel hard or like a massive relief, and how you feel about it might change from day to day. Over time my confidence has grown, and I recognise that my chairs are vital tools, which help me live a happy life.