Today is International Wheelchair Day – to me this is like Valentine’s Day, but for wheelchair users and their chairs. 

It’s almost ten years since my tics began having a significant impact on my mobility. I’d had an unusual walk for a long time but over the course of 2011 my mobility went from being unpredictable but functional to dangerous and extremely hard work.

Many people suggested a wheelchair before I seriously considered it. It felt like a big decision, but when I look back at all the reasons why I hesitated, it was concern about other people’s reactions that dominated my worries.

What I’ve learnt in the last decade is that wheelchairs are brilliant! They’re tools that can be used in many different ways and while they might sometimes have a bad public image, most wheelchair users love their chairs and the freedom and independence they offer.

This post is for new wheelchair users, people thinking about using a chair or those who are just curious.

It’s a deep dive into the knowledge I’ve acquired over the last ten years, lots of which has been passed on from other wheelchair users.

As a heads up, this is an epically long post so I’ve arranged it alphabetically which I hope will make finding your way through a bit easier.

A

Active User Chairs – These are super-lightweight manual wheelchairs, designed for users who can propel themselves. They’re sometimes also called High Performance Chairs. In the UK NHS wheelchair Services have specific criteria for providing this type of chair, and you can find an example of the criteria for one area here (on page 5).

Active wheelchairs are usually more expensive than other manual chairs and there are many different makes. They range from entry level chairs to high-end completely bespoke chairs like my current chair. Active chairs can be folding or rigid. Rigid chairs usually still fold but in a way that doesn’t reduce the strength of their back. Brands of chairs I’ve used include Quickie, Kuschall & RGK. I find reading wheelchair reviews useful when considering what will work for me – Review My Wheelchair is a site I’ve found informative. There’s more about types of chairs under ‘T’ below.

 

 

Allen Keys – Most wheelchairs use allen keys, known as Hex keys in some parts of the world because of their hexagonal design. I carry a set with me in case I need to tighten or adjust something.

All-Terrain Chairs – For me, as someone who performs at music festivals and loves the outdoors, having a chair that can cope with rough terrain was very important. My first all-terrain chair was a Trekinetic. It was part-funded by Access To Work because I was working in an adventure playground. In the end this one didn’t work for me and I now have a Mountain Trike Push. Both these companies offer power versions of their chairs too. You can find a roundup of all-terrain chairs here.

Some manual chair users find that having a front wheel is a quick and relatively cheap way of helping their everyday chair manage tougher ground. This is a wheel that attaches to the front of the chair and lifts the smaller front castors off the ground. I don’t know how well this works because I’ve never tried one myself. Another popular option is a power trike attachment that turns a manual chair into a powered trike. You can find examples of these here.

 Ambulant Wheelchair Users – This is a term that describes wheelchair users who can and do also walk. People use wheelchairs for all sorts of reasons, maybe because of issues with pain, fatigue, or due to a fluctuating condition. Ambulant wheelchair users may face some extra attitudinal barriers that arise from public misconceptions that all wheelchair users are paralysed. For many people, a wheelchair is something they use when they need it and not when they don’t. You don’t owe anyone an explanation, and many people are working to challenge these unhelpful ideas: check out #AmbulatoryWheelchairUsersExist on Twitter and this video by @annieelainey.

Attitudes and Assumptions – When I started using a wheelchair, I noticed some differences in how people in public responded to me. Generally, I found I was more likely to be treated with understanding, but that I was also more likely to be spoken down to, patronised or spoken over.

Some people feel they have a right to know why you use a chair – they don’t. It can be particularly hurtful if friends or family members say unhelpful things about your decision to use a wheelchair or any other mobility aid. My friends and family adjusted pretty quickly to me using a chair, despite some initial concerns. At first Fat Sister, who’s a doctor, thought a wheelchair ‘wasn’t necessary yet’, but within a few months couldn’t believe I’d carried on walking in such a dangerous way for so long. Some medical professionals may also have negative or rigid ideas about wheelchairs, butyou know your own body and what’s useful, so try not to let other people’s attitudes prevent you from using the aids that might help you.

Anti-tips – You can have anti-tips added to most manual chairs, they are fitted to reduce the likelihood of tipping your chair over backwards. Usually these can be swung into place, or not, as needed – I have them on my chair, but I don’t often use them. When they are in use it can make going up and down kerbs trickier.

B

Babies – I’m not a parent but I am an aunty, and when my niece Bean was little I used this type of strap to help secure her on my lap when indoors. It’s not designed for this purpose, so you’d need to assess the risks of using one for yourself very carefully. Disability Horizons have a post sharing top baby products for disabled parents, and there’s this guide on Baby Wearing in a Wheelchair. Designability is also currently recruiting disabled people to help develop a baby carrier for wheelchair users.

Bags – For wheelchair users, keeping things in our pockets isn’t practical or comfortable. I’ve done a lot of research into wheelchair bags and find that they fall into three main categories:

Back Bags – bags that go on the back of the chair

Front Bags – that attach to the tubes at the front of the chair

Under Bags – that go underneath the chair

Here are my top options in each area. It’s worth saying that in the last few years some great bags have been designed specifically for wheelchair users, but they do tend to be a bit more expensive than non-specialist bags. Bags add weight to a chair and that can affect its balance and how easy it is to push.

Back Bags: I use a brand called Handy Bag. They have several versions – there’s the Dynamic Bag which has a carrier, but I use a version without the carrier (I’m not sure if this is still available). These bags are good because, while they fix on the back and are spacious, they can be pulled around to the front while you’re sitting in the chair That’s something you can’t do with most backpack-style bags that just go over the handles. Handy Bag also do a side bag for power chair users.

Front Bags: There are two brands, Quokka bags and FFORA bags, who make great small bags that attach to the front, perfect for keys and wallets etc. Both have a fixing that goes on the front tube which the bag can be lifted in and out of. I have used, and like, both. You usually need to buy the fixing and bag separately – the Quokka bags have a metal strip that can be adjusted to most chairs while with the FFORA bags you need to get the right fixing for the brand of chair you have.

Under Bags: Quokka bags can also be fixed under the wheelchair, and Handy Bag do a specific under-chair bag. Handy Bag also do a small pouch that goes under the seat that’s an alternative to front fixing bags for small items you might need to reach for often. PYC (Pimp Your Chair) also do a range of under bags and pouches.

For a while I used a waist pouch, but I now prefer bags that attach to my chair.

Balance – I’m much safer as a wheelchair user than I was when I was trying to walk. One of the biggest risks, particularly with manual chairs, is of the chair tipping over. You’ll need to consider the requirements of your body, how stable you are, or how easily you can correct your balance if you start to tip. You can have anti-tips added to most manual chairs. Wheel position also affects stability – the further back they are, the more stable, but also the harder to push independently. My NHS wheelchair therapist and I had an ongoing negotiation about wheel position – it almost came to me signing a disclaimer in order get my wheels brought forward!

Barriers – I’m a big believer in a way of thinking about disability called the Social Model – you can read what I’ve written about it here and here. In the Social Model the idea of barriers is a key concept, and in this context, this means the obstacles we as disabled people experience because of a failure to consider the diversity of our bodies and minds in society.

As a wheelchair user I experience many physical and attitudinal barriers. They include steps without ramps, a lack of accessible toilets or restrictions on where I can sit in a theatre. Barriers like these can at times feel overwhelming, and I sometimes need to remind myself that they aren’t inevitable, and that neither my body nor my wheelchair is the problem: the problem is a lack of access, and this is something everyone has a shared responsibility to address.

In the UK the Equality Act 2010 plays a part in supporting us to remove these barriers – more on that later (under E). I find that having an understanding of my rights and thinking ahead about what barriers I might encounter and how I might respond to them, helps me feel more resilient when I experience them. When it comes to avoiding barriers, reading the experiences of other disabled people can be useful – review sites like Euan’s Guide can be really helpful.

Basic Chairs – Nowadays I use a state of the art, super-lightweight active wheelchair, but the first one I had was much more basic. I didn’t think I’d be using it for long and for me, finding the right chair has been an iterative process – I’ve discovered what I need mainly by trial and error!

NHS Wheelchair Services, who provided my first chair, have strict criteria about the types of chair they can prescribe and about who qualifies for a chair through their service. If you need a chair quickly, or just for occasional use, basic chairs like these or these or this can be bought for between £200 – £600. You can also hire wheelchairs (see Hire). If you’re going to be using a chair regularly or want to move about more independently you’re likely to need a more robust and bespoke solution.

Booking – As a wheelchair user you’re often required to book for things in advance in a way that’s different or more complicated than for non-wheelchair users. Sometimes this relates to limits on the number of spaces available for chairs or because a different procedure is required. Mia Mingus, a writer and disability justice campaigner coined the term ‘Forced Intimacy’ to describe the way disabled people are often expected to give more personal information about themselves than their non-disabled peers in order to access a service. Mia also described the opposite of this – where your access requirements are seamlessly understood and provided for, calling this ‘access intimacy’. I’ve found both these ideas resonate with me and they’ve been useful in helping me to understand my experiences in the world, and the extra work that is often expected of disabled people.

Booking processes differ depending on what you are booking for most commonly for me this is either transport – trains in particular or for events and activities.

I have written before about how long booking a train ticket as a wheelchair user can take, since writing this post small improvements have been made and you can now book assistance online. You can find out more about travel assistance for disabled rail passengers here.

In terms of events each venue will have it’s own processes – usually information about access will be available on a venues website or from the box office. In 2019 Ticketmaster committed to online booking for disabled music fans – a major step forward when it comes to equality of booking processes.

Buses – In the UK most public buses are wheelchair accessible, but access to them isn’t always equal. I’ve written about my experiences on public transport here. Transport For All is a great organisation that advocates for disabled people’s right to equal access to transport. They have information on buses here, and an advice line here. They can also help you report difficult travel experiences.

In London (where I live) wheelchair users often experience difficulties with drivers not knowing or applying the rules on access correctly. This often relates to buggies or pushchairs occupying the only wheelchair space. Bus drivers are given a manual called the ‘Big Red Book’ which you can download here. Information on access and how drivers are supposed to support disabled passengers is found from p.84, with specific information for wheelchair users from p96. I’ve found it useful to read the rules as they’re taught, so I can refer to the book if necessary.

Info on how to apply for a disabled person’s bus pass is here and for a Freedom Pass, here.

C

Casters – Wheelchair casters are the small wheels at the front of a standard manual wheelchair. They come in slightly different sizes and materials depending on how and where you’re likely to use your chair. A more detailed overview of choosing the right casters can be found here. For the last few years I’ve had shock absorbing ‘Frog Leg’ casters on my chair. When I got them, I noticed the difference immediately and I like their bounciness. This won’t be for everyone though, and I recommend testing them out and comparing them against non-shock absorbing casters if you can. Taking care of your front casters is important because they affect how smoothly your chair rolls and how easy it is to steer. They can get clogged up easily, usually with hair. Though this is generally quite easy to clear, it does require a certain amount of dexterity.

Children’s Chairs (paediatric wheelchairs) – When it comes to wheelchairs for kids lots of the considerations will be the same as for adults: fit (see under ‘F’), weight, safety, power or manual etc. But there will also be some key differences such as considering how equipment will need to change or adapt as children grow, navigate different environments, or build their independence. Just like for adults, the type of chair a child will need will be influenced by a range of factors including how often they’ll be using it, their level of understanding, and their awareness of danger.

There are some manufacturers like Hoggi who make only children’s chairs, But most of the big wheelchair brands like RGK, Quickie and Ottoblock also have children’s models. Some children might start by using an adapted buggy but longer-term these may not offer the same help with postural support, or building independence, as a wheelchair tailored to their requirements.

For children under 5 who’d benefit from more independent mobility, there are loan schemes for Whizzybug and Bugzi powered wheelchairs for pre-schoolers.

Just like for adults the equipment available on the NHS is likely to be more basic and they don’t provide power chairs for younger children. Organisations like Whizz Kidz can help families bridge this gap and get the more specialised or bespoke equipment a child requires. Whizz Kids also run clubs and wheelchair skills training for children and young people.

If you’re the parent or carer of a child with a mobility impairment, the range of wheelchairs might feel overwhelming, or maybe you’re worried about people’s perceptions of your child – finding the right chair is transformative and, in my experience as an inclusive playworker, the more a child can play and explore, the better for their wellbeing and development. Here are a few tips in case they’re useful:

Do talk to adult users if you can,

Do explore the range of equipment available

Do test equipment out or trial it wherever possible

Do be ready to advocate for what your child needs.

Do talk positively about the equipment to your child and to other adults.

 

Congratulations – It can take time to adjust to life as a wheelchair user. Some of the things that come up may relate to how you feel about using one, or to the practicalities of life on wheels. But it’s likely that other people’s reactions, emotions or pre-conceptions will play a part too. Wheelchair use is often seen as a tragedy, and most people will receive commiserations. But I’m here to say congratulations! Congratulations on doing what’s right for you or your family. My wheelchairs have been a crucial part of many amazing adventures, experiences and memories. The negative public perception of wheelchairs is often in stark contrast to the love many users feel about their mobility aids.

Clothes – Most clothes are designed with standing bodies in mind. It took me a while to appreciate this and to adapt my wardrobe accordingly. Coats are a particular problem because if there’s a lot of extra fabric bunched up around your middle it can be uncomfortable or get caught in the wheels. Similarly, it took me a while to realise that dirty sleeves are almost inevitable if I was pushing myself, and that it wasn’t just my carelessness. You can get sleeve protectors for particularly muddy days, but they’re a bit of a hassle to wear all the time.

There are some specific brands that consider wheelchair users when designing their collections such as Kintsugi Clothing or Rollitex. Some big brands have also flirted with clothes for wheelchair users, although this often feels more like a marketing exercise than a genuine desire to make accessible clothing. In 2018 ASOS made this onesie, and I’ve seen lots of hype around Tommy Adaptive although their range, particularly for adults, seems quite limited.

My sense of style hasn’t changed much over the last decade, but it has evolved as a result of being a wheelchair user – jumper dresses and jeans feature less than they used to, and my current go-to staples are black leggings, bright tops and coordinating tracksuits.

Finding clothes that fit well and make you feel good can take longer as a wheelchair user and if you’re looking for inspiration check out disability fashion bloggers, models and influencers, such as Stephanie Thomas, Emma Muldoon, Sarah Lex, Annie Segarra, Jillian Mercado and Aaron Philip.

Cushions – While wheelchairs are brilliant, sitting down for long periods of time can lead to pain or discomfort. What you sit on can make a big difference to your comfort. What you need from a wheelchair cushion will be individual and will relate to the requirements of your body. You can find some tips on choosing a wheelchair cushion online, including this factsheet from the Independent Living Foundation.

D

Dogs – Some manufacturers do make dog walking accessory kits for wheelchairs. Some wheelchair users also adapt dog walking kits for bikes. Tips and tricks for walking a dog from a wheelchair can be found here (I’ve not tried any of these myself, Monkey wouldn’t forgive me!).

Doors – Getting through doors as a wheelchair user can be tricky, either because they’re not wide enough or because they’re heavy and don’t have a push-button opening system. If you need to widen doors in your home, you might be eligible for a Disabled Facilities Grant. Shelter have this basic information for disabled renters and the Disability Justice Project have more detailed information here. Wheelchair skills training, such as this video, can also help you learn how to navigate doors safely.

E

eBay and pre-loved – Good wheelchairs can be expensive, and you might well need more than one, either so you have a backup if something goes wrong or in order to participate in different types of activity. The NHS will only ever supply one chair even if what you need isn’t achievable using a single piece of equipment.

The chairs I’ve got are great, but I still keep an eye out for second hand models that might be good for me. Lots of wheelchair suppliers will have ex-demo chairs – chairs that have been used for test drives.

The challenge with buying pre-loved or ex-demo is making sure the chair fits and meets your specific requirements. For some people, all wheelchairs might seem the same, but they’re definitely not. Because I have a chair that fits me well, when I’m browsing, I look for chairs with similar dimensions. There are more tips for buying used wheelchairs online here and here.

Once you’re clear about what you need there are specialist sites like Access Your Life or The Disability Equipment Service or more general buying and selling sites like eBay.

Equality Act – The Equality Act 2010 is legislation that exists to protect people in the UK from discrimination on the basis of protected characteristics. Disability is one of these protected characteristics.

Disability discrimination is when you are treated less well or put at a disadvantage for a reason that relates to disability. You can find out more about disability discrimination here.

The Equality Act applies to workplaces, education, and to any businesses providing services, like shops, restaurants or leisure facilities. You can find more information on the Equality Act and what this means for disabled people on the Disability Rights UK website, and there’s an easy-read guide to the Equality Act here.

A key idea in the Equality Act is the responsibility of an employer or service provider to make ‘reasonable adjustments’. This might mean:

Changing the way something is done

Changing the physical environment

Providing an additional aid or service

For me, knowing that I have the right to request reasonable adjustments has helped me feel more confident in dealing with an often non-accessible world. I’ve written about the reasonable adjustments my local swimming pool makes that enables me to exercise safely, as well as the adjustments that are made for me at work, and those I ask for when I go to the theatre.

For more on who might be able to help if you think the Equality Act has been breached, go to Law, under ‘L’.

F

Fit – Having a wheelchair that fits you well makes a big difference to how comfortable, safe and easy to use the chair is. Most suppliers will measure and advise on the fit of the chair so do ask questions and explain how you plan to use the wheelchair. Many suppliers will also offer home visits to measure for a chair and then fit it. I’d always recommend that this is done by a professional but you can find information on the different measurements required here.

Flying – Some aspects of travelling by plane as a wheelchair user can be stressful – in particular, for me, having to part with my chair so it can be put in the aircraft’s hold. In fact, it was watching from the window as my chair was manhandled that first made me realise how much I think of it as part of my body.

My job as a performer means I’ve had the opportunity to travel quite a lot in the last few years and these are my top tips for flying as a wheelchair user:

Think about your preferences and requirements in advance and where possible communicate these to the airline

Consider insurance that covers your wheelchair for air travel and includes supplying replacement chairs if applicable – some airlines argue that wheelchairs are items of baggage and as such will only pay up to the maximum for lost or damaged luggage rather than the actual cost of the equipment they have damaged. Similarly, being left without any means of mobility is likely to have a significant impact on your work or holiday (more on insurance under ‘I’).

Check in your wheelchair’s instructions for any specific information on how your make of chair should be transported by air

Know the weight of your chair and if it’s a power chair, the battery information. You will be asked about this when you check in

Utilise the special assistance that’s available at most airports

Take your chair to the gate so you have it with you in the airport and can speak directly to those putting it in the hold

Make sure any bags are removed from your chair ahead of going through security!

Make sure you’re allowed to board first so you can get to your seat without an audience

If you need an aisle chair (narrow wheelchair for use on planes) during the flight, to access the toilet, mention this at check in and also ask the flight crew when you board – in my experience this is particularly important for short-haul flights

Be clear about when you’ll get your chair back after landing – for me this must always be at the gate because it’s not safe for me to use airport wheelchairs

More information and tips for wheelchair users travelling by air can be found here and here, and information about flying with a power chair is available here. There are people campaigning for more equal provision for wheelchair users when flying – find out more here.

Folding – Most manual wheelchairs fold in some way. There seem to be two main ways this happens:

• If a chair is described as a ‘folding chair’ this usually means it collapses in half – this is the type of chair that most people are familiar with.
• Rigid wheelchairs usually still fold but they do it in a way that doesn’t compromise the strength of the back support. They usually fold forward into the seat, and most also have quick release wheels which means the chair can be transported more easily if required. Some chairs go even smaller – my current every day chair is designed to fold super small even though it’s a rigid chair (see image below). When I first started using a wheelchair, I used a normal folding chair – but because I was using it a lot each day and because I move around a lot, this type of backrest was much less supportive and comfortable.

Funding – I’m going to talk about wheelchair funding options from a UK perspective.

NHS Wheelchair Services – In the UK The National Health Service provides access to some types of wheelchair for some wheelchair users. It does this either by providing equipment itself, or a voucher to use with a private supplier, or through a personal wheelchair budget. I explain more about NHS Wheelchair Services and my personal experience using this further down under ‘N’ for NHS.

The remainder of this section will be about ways to fund a wheelchair not covered by the NHS.

Access To Work – When I first started using a wheelchair I worked in an adventure playground and not only was it hard to move around over the rougher ground but also it was taking a toll on my NHS wheelchairs and they were breaking regularly. Access to Work provides the practical support working disabled people need to do their jobs, for me this includes paying the ongoing costs of my support worker and accessible travel, but they also fund one-off pieces of equipment like wheelchairs. Access To Work funded the first chair that gave me a real sense of independence at work and more recently they have funded my current super-lightweight shock absorbing chair. Access to Work usually only fund the chair for the days you’re at work, so as I work full time – five days a week – they funded 5/7^ths of my chair and I covered the other 2/7^ths. You can get Access To Work support if you’re a paid employee, earning at least the minimum wage, or if you are self-employed.

Self-Funding & Crowdfunding – Having a chair I could use independently at work helped me realise what a big difference the right wheelchair could make, but while my all-terrain chair was great at work, it was too big to use in the shops or at home, so outside of work I was still very reliant on a heavy NHS Chair. In 2014 I saved up my Disability Living Allowance (now known as PIP) and used other savings to buy my first lightweight rigid chair privately. Lots of disabled people end up saving or using crowdfunding websites to buy the equipment they need. Power chairs are even more expensive than manual chairs and for many, this is the only way to get the equipment they require. I know some people that have used sites like Go Fund Me or Just Giving and there’s more information on crowdfunding for a wheelchair here.

Grants and Charities – Some charities will give grants to individuals to help purchase the wheelchair they need. There’s a good list of grants for adults here and for children, here and for equipment grants here. For children the charity Whizz Kids provides powered and manual wheelchairs, as well as running clubs for young wheelchair users. Turn To Us also have a searchable database of grants here.

People who require a power chair or mobility scooter and are in receipt of the enhanced rate of the PIP Mobility component, can use the Motability scheme which covers the lease of power chairs and scooters as well as adapted cars. Many suppliers have lists of funding options that might be more specific to their products or location. When I purchased my most recent all-terrain chair I used a finance package available through the supplier, to pay for the chair over the course of two years.

G

Gloves – Self-propelling a wheelchair can put pressure on your hands causing blisters or other pressure injuries and some people find protective gloves helpful. You can buy specific gloves like these or these or use gloves designed for cycling.

H 

Hire – If you need a wheelchair on a temporary basis or while you wait for more permanent equipment to arrive, hiring a chair may be an option. In the UK the Red Cross has a wheelchair hire service, it costs £15 a week for up to 20 weeks but if these costs are unmanageable, they may be able to offer further assistance. From my understanding the wheelchairs they provide are manual or transit wheelchairs. There are other mobility equipment hire companies too, some offer a wider range of equipment, including active user chairs. You can also hire specialist equipment like an all-terrain mountain trike, or mobility scooter.

I

Insurance – I have specialist insurance for all but my NHS wheelchair. This is something I was very glad of when my chair broke suddenly in Edinburgh a few years ago. There are a number of different options for power and manual chair users, and this leaflet from the NHS lists a few of the more established companies.

J

Jokes – I didn’t have anything for J and then I realised as wheelchair user you get used to hearing the same old ‘jokes’ over and over again – I use the term joke loosely. Regulars include:

“Have you got a licence for that thing?”

“You’ve got the right idea; I could do with a sit down.”

“I’m going to give you a speeding ticket.”

“Don’t run over my toes.”

Comments like these are rooted in the awkwardness that some people feel around disability. There also seems to be an unspoken pressure to be ‘good natured’ about wheelchair users and understand that they ‘mean no harm’. Cumulatively these comments and jokes can take a toll and feel wearing.

How I respond definitely depends on my mood.

If you’re a wheelchair user people will often feel entitled to your life story – they’re not and you only ever need to answer questions that you’re comfortable and happy with. If you’re looking for inspiration for clever comebacks then check out @Imani_Barbarin’s #ComebacksForAbleism or this article.

K

Kerbs and Cobbles – As a wheelchair user you quickly learn how treacherous lots of pavements and pathways can be, and how often drop kerbs (kerb cuts in the US) don’t line up with each other. Drop kerbs are important for wheelchair users because they’re the easiest and safest way to get on or off the pavement. You can apply to have a dropped kerb installed here.

When a drop kerb isn’t available, manual wheelchairs can usually go up and down a kerb by tipping back slightly onto the big wheels – some wheelchair users can do this independently, but others (like me) will lack the body control or strength to do this without assistance. There are wheelchair skills training providers and videos that might be useful when it comes to building your skills outdoors.

While cobbles look nice navigating them on wheels can be a pain in all senses of the word. The risk of poor paving is that it might unbalance or damage your chair, and at certain times of year – when there are lots of leaves or puddles – hazards can be harder to spot. Wearing a seatbelt has kept me safe in some big tumbles. My chronic pain is exacerbated by bumps and investing in shock-absorbing wheels has helped me (go to Shock absorbers under ‘S’ for more on this). There’s more on navigating different types of terrain here.

L

Law – The sad reality is that many disabled people experience discrimination or don’t receive the support they’re entitled to. Here’s a list of services that can offer advice to on your legal rights and options:

Disability Justice Project – An Inclusion London project that supports deaf and disabled people to make rights a reality

Disability Law Service – Provides free legal advice and representation for disabled people. They have particular expertise in community care, employment, housing, welfare and supporting those with Multiple Sclerosis.

Disability Rights UK – Have a list of organisations that provide specialist advice.

Independent Provider of Special Education Advice – IPSEA offers free, legally based information, advice and support to help get the right education for children and young people with special educational needs and disabilities (SEND)

Child Law Advice – phone and email advice for parents and carers, including advice about disability discrimination within schools.

Lights – I live in London and so even at night there’s quite a lot of light, but nevertheless I find that having a light on my chair during the winter is useful. A simple inexpensive trick I picked up from a wheelchair user based in Chile was to use detachable LED bike lights like these. More playfully, I had flashing front casters for a while too.

 

M

Maintenance – I’ve become such a wheelchair geek that I can’t think of anything more relaxing than an afternoon tinkering with my wheelchair. The NHS are not into you doing any maintenance yourself because it’s covered by wheelchair services – they even kept the tools that came with my chair so I wouldn’t get tempted! But when it comes to my other chairs I’ve got better at undertaking basic maintenance and checks, partly because getting someone out to service or fix a chair will usually incur a call-out fee. I’ve also taken my chair into bike shops to get help with fixing a particular issue, with varying degrees of success. I recommend considering any ongoing maintenance costs when choosing your chair.

Motability – The Motability Scheme is available to people in the UK on the higher-rate mobility allowances. It helps you to lease a new affordable car, Wheelchair Accessible Vehicle, scooter, or powered wheelchair. More on how the scheme works here.

N

NHS Wheelchair services – In the UK the National Health Service provides access to wheelchairs through local wheelchair services. In most cases this requires a referral from an associated health professional such as a your GP, physiotherapist or occupational therapist. I was first referred by the local orthotics team. The wait for an assessment can be long and the exact criteria for different types of equipment vary from area to area. My experience of NHS wheelchair services has been very positive – I’ve always had an occupational therapist and a wheelchair technician at my appointments, with the OT working out what’s needed, and the technician working out how best to achieve it.

My wheelchair team has always worked hard to provide the best equipment they can, but there are restrictions on what they’re able to provide. Everything has to be clinically justified, and in my experience, they’re cautious when it comes to balancing risk and independence. The criteria for receiving a power chair on the NHS is quite tight too. I have limited personal experience of this because a power chair isn’t a safe option for me, though my wheelchair team did consider it at first.

I was not initially considered an active user because I can’t balance or propel my chair completely independently.My first wheelchairs didn’t cope well with my work outside and my active life. They broke often but were always fixed quickly, and wheelchair services kept looking for ways to improve my chair. Eventually though, I self-funded an active chair and, at a more recent assessment after using it safely for a number of years, I was re-classified as active user which meant I could be provided with a more specialist piece of equipment.

My current chair is pretty much as good as you can get through the NHS, and they even used me to test some products they don’t normally supply, such shock absorbing castors. You can also pay for specific extras and use them with your NHS equipment. For example, I have Spinergy Wheels on my NHS chair which they don’t cover. The really good thing about NHS wheelchairs is that a local team maintains them and there are no ongoing insurance or servicing costs. The chair isn’t technically yours though, as it’s loaned through the NHS and needs to go back to them if you no longer need it.

It’s only since having a totally bespoke made-to-measure chair that I’ve fully appreciated the gap between what’s available through the NHS and what’s possible if you start from scratch. My NHS team were key to getting funding for the new chair by providing a letter saying there was equipment I would benefit from that they couldn’t provide.

The NHS Voucher Scheme – Most wheelchair services offer a voucher scheme where you get the equivalent cost of your prescribed equipment to spend with a private supplier.

The voucher scheme has a partnership option that widens the range of approved equipment you can choose from and means that the NHS still maintains the chair. Or there’s a fully independent option that gives you free choice of chair, but maintaining it is calculated and included in the amount offered. The responsibility to maintain the chair is then with you. Generally you can’t get another voucher or chair for a set number of years – usually around 5 – unless your clinical needs change. Most recently Personal Wheelchair Budgets have been introduced, alongside the voucher scheme – more on this  here.  

O

Occupational Therapists (OT) – OTs help to make everyday tasks or activities easier by providing aids or equipment. They might be involved in assessing you for a wheelchair or helping to make your home safer and more accessible. In the UK most local Councils will have an Occupational Therapy service and you can ask your GP to be referred for an assessment if using parts of your home or doing specific tasks is tricky.

P

Pain – However great your chair is, our bodies aren’t made to be seated all day and this can lead to or aggravate pain. Things that have helped me are having a really well-fitting chair, regularly getting out of my chair to stretch, and doing exercises and hydrotherapy to strengthen my core muscles.

Parking – People with mobility difficulties can apply for a disabled parking badge, also called a Blue Badge, which allows you to park in disabled parking bays, as well as a range of other parking and road use concessions. One of the things non-wheelchair users don’t often appreciate about disabled parking spaces is that it’s not just where the bay is located that’s important, but the extra space around the it – usually marked with hatching that allows space to put your wheelchair next to the vehicle door so you can transfer safely from a seat into your chair. If you’re a blue badge holder you can ask your council to install a disabled parking bay near your home. These are then generally available to anyone with a blue badge. It’s not specifically your bay, but it’s still very useful – your local Council will have its own procedures and criteria for this.

Personal Independence Payment (PIP) – Is a Disability Benefit for adults over 16. It’s not means-tested and is available to disabled people who work, as well as to those who don’t. It exists to cover the extra costs of living as a disabled person in a world that is often not set up with our requirements in mind.

A guide to making a PIP claim is available from Disability Rights UK. You can use your PIP to cover anything, but I’ve found it particularly helpful when it comes to meeting the ongoing costs of my chairs, like wheelchair insurance (more under ‘I’) or saving up for new equipment. For disabled children under sixteen there’s the Disability Living Allowance – a parents’ guide to applying for this is available from Cerebra.

Power – Power Chairs and Power attachments for manual chairs can be game-changing in terms of independence. Power options are great for people who can’t self-propel or who have conditions that affect their stamina or strength. I’ve explored lots of power options but have yet to find any that I could use safely, due to my arm tics and poor impulse control.

The closest I’ve come to suitable power option is power assist wheels. These wheels attach to a manual wheelchair just like a regular pair, but they boost a user’s pushes using an electric motor. Other power add-ons include devices like Smart Drive or SMOOV One. A number of my friends have power trike attachments for the front of their chairs which look great, and work on a range of different terrains.

I have less personal experience with power chairs and mobility scooters, but this Wiki How on choosing a powerchair looks thorough, and Living Made Easy  has a guide to choosing the right product. There’s also information and reviews of specific powerchairs on Review my Wheelchair .

Q

Questions – When it comes to getting the right equipment, ask questions, read reviews and if possible chat to other people who have a similar impairment or who have the type of equipment you’re considering. I love chatting about chairs and helping people with this part of their journey.

Some questions are good to ask your wheelchair supplier like:

• Does the chair have a warranty?
• What maintenance is likely to be required?
• How does it fold down? Or
• Is it crash tested?

Some questions might be useful to ask of yourself like:

• Am I going to use the chair, indoors, outdoors or both?
• Where will I keep my chair when I’m not using it?
• Do I need to be able to transport it easily?
• Do I want the option of staying in my wheelchair when I travel by car?
• What do I want to be able to achieve in my chair?

 

R

Radar keys – Accessible toilets are facilities for disabled people that are bigger than standard cubicles so you have more space to move around and can have someone in there with you if necessary. There are lots of reasons why a disabled person might need to use an accessible toilet – being a wheelchair user is just one of them.

Accessible toilets should meet a specific standard both in terms of space, how they’re laid out and what equipment they have in them. When they’re correctly laid out there should be space to put your chair next to the toilet so you can transfer across. There should be an emergency cord that runs all the way to the floor that you can use to call for help in an emergency and grab rails to hold on to.

Because disabled people might need to use their hands much more than non-disabled people, keeping the cubicles clean is important. So is being able to access them quickly – some disabled people have conditions that mean they get limited advance warning when they need to go! To help make sure they’re clean and available when needed, many accessible toilets in the UK are locked and you need a Radar Key to open them. You can buy these for a small fee here.

Increasingly there’s an understanding that even when everything is correct, standard accessible toilets aren’t accessible to all disabled people, either because they require additional equipment, or more space.  Changing Place toilets are the response to this – they’re bigger and have a hoist and height-adjustable table amongst other specialist equipment – the full specification is here. There’s even a map so you can find your nearest Changing Place facility.

Ramps – As a wheelchair user, ramps can be your friend, but they can also be dangerous if they’re not the correct one. Here are a few useful things to know about ramps:

Incline: If a ramp is too steep or long without rest points, they can be dangerous. The guidance on the gradient and specifications for ramps can be found here.

Permanent Ramps: Where space and resources allow, a permanent fixed ramp of the correct gradient is preferable to more temporary solutions because it allows for quicker, more equal, and independent access.

Temporary folding and rolling ramps: Where there isn’t space for a permanent ramp a folding ramp can be a good solution. There are lots of different types, and making sure the ramp you have is suitable is crucial.

Wedges and threshold ramps: For very small changes in height, small wedge-shaped ramps can be useful. You can also get ramps that go up and down and spread across a threshold, like a very mini bridge. I’ve used both these types of ramp at home to help make it easier and safer for me to move in and out of my garden.

Track ramps: These are my least favourite ramps and I avoid them if I can. They’re not suitable for all chairs and involve lining up the wheels on the individual tracks.

I’ve been in situations where it’s clear that the staff putting out a temporary ramp don’t know how it works, or where it hasn’t been correctly assembled or set up. Only use a ramp if it feels safe to you and don’t feel pressured into doing anything in a way that feels unsafe.

S

Shock Absorption – Using a chair can be a bumpy experience and this can cause or aggravate pain. You can buy shock absorbing frames, wheels and caster wheels. All of these add some extra weight so it’s a balance between comfort and independent movement. If shock absorption might be useful to you, try out any products in advance if you can, to make sure that you feel the benefit. Products that might be worth considering include: Softwheels, Loop Wheels and Frog Legs Caster Forks.

Spoke and Wheel Covers – My first wheelchair had black wheel covers because there was a concern that I might involuntarily put my hands in the spokes. At the time I longed for more colourful and stylish options. Now, excitingly, there are Izzy Wheels, set up by sisters Ailbhe and Izzy, with loads of incredible designs and collaborations. Or, if you’re based in the US, check out Wheels of Fun.

 

In 2017, I performed the role of Mouth in a neurodiverse production of Not I. For this I needed to turn my blue spokes black, but new wheels were too expensive, and I was reluctant to paint my spokes. Then someone suggested I look at motocross spoke covers and I was thrilled to find not only black covers but a whole range of options. These plastic covers are relatively cheap and slip over spokes making it possible to change the colour of your spokes whenever you wish.

 

Sport – Exercising as a wheelchair user will differ from person to person. The UK Parasport Association has a searchable list of accessible sporting opportunities. Wheel Power has some great resources and wheelchair workouts. You can buy specialist adaptive work-out equipment but this does tend to be expensive and may not suit everyone. This is quite a good overview of the type of equipment available: it goes from basic leg exercises to comprehensive home gyms.

When I can, I enjoy going cycling with specialist cycling organisation Wheels For Wellbeing. They’re based in south London but there are other similar organisations across the UK – check out Inclusive Cycling UK for more information.

If you like your sport more extreme, then check out WCMX – wheelchair-using athletes perform tricks adapted from skateboarding and BMX. You can get WCMX chairs from specialist suppliers like RMA and Box Wheelchairs. The sport’s still quite new; in the UK there is a WCMX Facebook group here.

I find swimming the best form of exercise for me and I’m lucky to live near a hydrotherapy pool. A few years ago, I brought an inflatable hot tub and it’s become a crucial part of my daily routine. It’s just big enough for me to do simple exercises in and plays a major role in managing my pain.

Whatever exercise you like, it’s good to know that some fitness trackers can be calibrated for wheelchair users – more on this here.

Staying Warm – As a wheelchair user, being more static can mean that you get cold more easily. The traditional solution is the trusty lap blanket. There are also purpose-made wheelchair cosies, including more trendy ones like these from Bundle Bean. My preferred solution is to wear snow trousers or a snow suit when it gets really cold.

Straps and Pads – Amongst the many wheelchair accessories available are a range of straps and pads. Here’s an overview of the common ones:

Seat belts come in a range of different forms including simple lap belts to more comprehensive harnesses. Talk to your occupational therapist or supplier about your requirements. I use padded lap belts and have them configured so they go across the top of my legs rather than round my middle as this is more comfortable. You can also get seatbelts that require a specific tool to open them so they can’t be undone by the user, I have one like this when I’m performing high up in Not I, and need to be sure that I won’t involuntarily undo my seatbelt and throw myself down.

Leg and Calf straps can help keep your legs in place, and pads for your chair’s frame can help reduce how scratched it gets.

Suppliers – There are lots of suppliers of wheelchairs. Some of these are manufacturers who make chairs themselves, but many will be sellers of a range of chairs manufactured by different companies. It’s important to find the right kind of supplier for you. The charity Back Up Trust  have a wheelchair panel – a group of specialist wheelchair companies they trust. Do some research around local suppliers –  many do home visits, assessments and test drives. And check out reviews of the supplier, not just the chairs they supply.

T

Toys – Last Christmas my friend Ruby who is nine asked for a wheelchair-using Barbie. I was super-excited to be able to get this for her and even more excited that Barbie and I have very similar chairs! Barbie’s not the only one to have recognised the importance of toys that reflect the diversity of our bodies and minds, and Toy Like Me have been campaigning for improved representation of disability within toys. They keep a list of toys that relate to disability here. I love my super spinny hot wheels wheelchair almost as much as my real chairs. Welly Walks by Hannah Ensor which features a wheelchair user has been one of my niece’s favourite books since she was small.

Transfers – Transferring is the process of moving into and out of your wheelchair. Some people will be able to do this independently, others will need support from another person or a simple piece of equipment like a transfer board. Some people will need to use more complex equipment like a hoist.

Types of Chair – One of my pet gripes with media portrayals of wheelchair users (when created by non-chair users) is when the type of wheelchair a character uses doesn’t ring true. The main reason for this is that non-wheelchair users seem to think all wheelchairs are the same! But they’re definitely not! There are many types of wheelchair and they’re usually prescribed to meet an individual’s specific requirements. Below is a quick overview of the main types of chair:

Attendant Propelled Wheelchairs (always pushed by an assistant)

• Transit Wheelchair have four small wheels and need to be pushed by an assistant rather than propelled by the person using the chair
• Adapted Pushchairs are suitable for younger children with mobility impairments. They’re similar to regular pushchairs but are usually bigger, stronger and more supportive. They have to be pushed by an adult so don’t offer much scope for independent mobility longer term.

Manual Self-Propelled Wheelchairs (Propelled by the user or pushed by an assistant)

Manual self-propelled wheelchairs usually have two big wheels at the back and two smaller wheels at the front. Users can propel themselves using the big wheels.

• Basic Wheelchair are sturdy chairs intended for shorter term or part-time use
• Medium Active Wheelchairs are for people who need a chair regularly but have limited ability to self-propel
• Folding Active Wheelchairs (High Performance Chairs) are for people who are able self-propel. The chair folds in half quickly
• Rigid Active Wheelchairs (High Performance Chairs) are for people who can easily self-propel. Rigid chairs do fold but have a rigid back that is more comfortable and supportive
• Tilt In Space Chairs are for those who need high levels of positioning support
• Bariatric Wheelchairs are for larger people

Power Wheelchairs

Manual Wheelchair With Power Add On – A manual wheelchair with a power attachment – see the Power section ‘P‘ for more detailed information.

Power Chairs – Powerchairs come in different classes depending on how fast they go and what type of drive they have, including Rear Wheel Drive, Front Wheel Drive and Mid Wheel Drive. Information on choosing the right type of power chair for you can be found here and here.

V

Vehicles – Wheelchair Accessible Vehicles (WAV) – A WAV is a vehicle that’s been designed or adapted so that wheelchair users can travel in the vehicle in their chairs. If you travel in your chair, make sure it’s secured correctly and has been crash tested. I prefer to transfer into a seat to travel, and to put my wheelchair in the back. Vehicles can also be adapted for wheelchair using drivers – there’s more about what’s possible here. If your wheelchair is too heavy or bulky for you to lift you might want to consider a roof-mounted hoist or similar equipment.

W

Wheels and Tyres – Years ago Leftwing Idiot used to build computers and watching him do this helped me realise that computers were just a collection of parts rather than a single unit and that you could configure them for specific purposes. Wheelchairs are very similar. While they all have wheels, the type of wheels, tyres and push rim can make a big difference to the experience of using the chair. I’ll give a brief overview of the main wheel options:

Super Lightweight Wheels – Most wheelchairs will come with a set of wheels, but these may not be the best for your requirements

Quick Release Wheels – Most wheelchair wheels are quick release which means they can be quickly popped on and off to transport the chair, or to change the type of wheels for a particular activity

Fat Wheels – Extra wide wheels that are good for rougher terrain

Brilliantly Bouncy Wheels – shock absorbing wheels like Loop Wheels or Soft Wheels (see also Shock Absorption)

Solid Tyres – These tyres are not filled with air which means they won’t get punctures but they’re harder than air-filled (pneumatic) tyres

Pneumatic Tyres – Air filled tyres tend to give a slightly more comfortable, cushioned ride although there’s always the risk of punctures. I changed from solid to pneumatic tyres about three years ago and thankfully haven’t had a puncture yet.

Pushrims/Handrims – are the bit of the wheel the user holds onto in order to manoeuvre the wheelchair. I have limited dexterity in my hands so my pushrims are rectangular in shape rather than round which makes them easier to grip. You can also get rubber grips that slip over the pushrim. If you have an impairment in one arm or hand you can get one-arm-drive wheels.

Thumb guards – these cover the gap between the tyre and the pushrim and can make it safer and easier to grip for some people.

I’m yet to think of anything obvious for the letters U, X, Y and Z and this post doesn’t need to be any longer than it already is!

If you’re a wheelchair user and have other insights that might be helpful to those at the start of their journey on wheels, please comment below. I’ve tried to share what I know as accurately as possible, but I’ve written this based on my experiences so I might well have missed something.

Thinking about wheelchairs makes me very happy. Getting the right one is important so don’t be afraid to take your time, ask questions and try different options. Please also get in touch at any point if it’s helpful.

Happy Wheelchair Day to all my wheelchairs and wheelchair-using friends.