Wheelchairs aren't used, they are worn
RachaelHackOnWheels
Member Posts: 16 Listener
My name’s Rachael, and I want to talk to you about #HackOnWheels.
#HackOnWheels aims to enable all wheelchair users, wherever they are, to access a wheelchair that has been fully customised to meet their individual needs. #HackOnWheels is a movement to create the first ‘open source’ wheelchair.
Crowd-sourced design challenges from wheelchair users will put the user at the heart of the design process. An online library of open
source wheelchair designs, with a platform that allows online design
collaboration, will drive innovation in the market. A design code for open source
wheelchair designs in the online library meanwhile will ensure that designs can be made
from standard parts that are easy to obtain, making it cheaper for wheelchair
users to repair their wheelchairs.
Wheelchairs need to be designed for the individual
Back in June, when I first introduced #HackOnWheels to this forum, I asked what you would want to change about your wheelchair - "What do you think of your wheelchair? Does it meet your needs?"
We were overwhelmed by your response. Nearly 100 people shared their views and experiences. Your contribution has helped us define the challenges we set designers and to promote great wheelchair design.
Since starting #HackOnWheels, I’ve been struck by the creativity of wheelchair users who’ve participated in our events and forums. Almost everyone I’ve spoken to throughout this journey has shared stories of how they’ve ‘hacked’ their wheelchair to make it a better fit for them, whether by changing the wheels to improve suspension for sport, making new brake pads that fit the shape of their hand or spray-painting the frame to suit their individual style.
What’s become clear is that our wheelchairs are as individual as their users. So much so that I’m not sure ‘user’ is the right word. When you customise a wheelchair to suit you, you don’t ‘use’ a wheelchair, you wear it.
Just like a pair of shoes, a wheelchair needs to be customised to the body, lifestyle and environment of its user (or ‘wearer’) in order to give freedom and independence. Just as someone probably wouldn’t wear high heels to cross a muddy field or climb a mountain, wheelchairs need to be suitable for our environment. And when they’re not, when we can, we ‘hack’ them!
Join us for an afternoon of discussions
On the 21st September, #HackOnWheels will be hosting an afternoon of talks and discussions to explore how we can change perceptions by re-thinking wheelchairs as an extension of the body or as wearable technology, a fashion piece or lifestyle product.
Part of the London Design Festival, the Fix Our Wheels workshop and Fix Our City exhibition will also be launching the #HackOnWheels Manifesto and Student Design Award. If you can make it, simply sign up here.
Tell us about your wheelchair
I’d love to hear from you! Do you see your wheelchair as something you wear? Is it fashionable? Would you like it to be? Do you think of your chair as an extension of your body? Would you like to? Do you see your wheelchair as a lifestyle product like a bike, roller-skates or scooter? Let us know what you think in the comments below or by tweeting (at)HackOnWheels.
Replies
Within this school they have departement called "Expertisecentrum Bewegingstechnologie". Within this expertisecentre they are doing research on several subjecten among the way people manouvre and developing wheelchairs for fe The Dutch female wheelchairbasketball team. May be it is interesting to get in contact with them.
Let me know whether I can do something for you. Mrs Rachael Wallach knows how to contact me if it is not possible through this platform.
Below a link to their website which unfortunately is in Dutch:
https://www.dehaagsehogeschool.nl/onderzoek/expertisecentra/expertisecentrum-bewegingstechnologie
Thank you for your comment! Have you made any adaptions or changes to your chair since getting it?
Cost is the prime consideration when buying a wheelchair. Functionality comes (unfortunately) in second place, whilst appearance comes a distant third.
When an assessment of a chair is carried out there should be an inclusion of relating cost to purchase by NHS and all other HMG departments.
Most wheelchairs are badly designed and based on work done many decades ago with 19th-century materials. When 'good' wheelchairs are priced at many times the price of a Chinese import there is a problem in justifying cost.
e.g. We bought a Chinese mobility scooter for £400 a few years ago. The 'pretty' UK model with the same or lower specifications started at £2000.
In practice, £400 is saveable from benefits £2000 becomes a big chunk of Mobility every month.
Just our opinion,
Jon (& Chrysi)
As a mum, I'd also like adaptations for pushing my own baby!
Lizzy
Twitter: (at)shopgirlygm
it's a Segway based Genny that I control - in part - by shifting my body weight forwards or backwards.
Totally amazing machine that's transformed my life.
Unfortunenately it also came with a hefty price tag too!
Hey Ho - or should that be Tally Ho!
The best way of doing what you want is to contact your local CAB and find out what benefits you qualify for. If you have a local disability charity they can help as well. Your consultant can refer you for an NHS chair.
There are charities that let people have wheelchairs if they need them.
Very basic electric wheelchairs can be bought for a couple of hundred. Second hand ones are sometimes available on eBay for a lot less. Local freeads papers and online sites often have free wheelchairs when people are clearing house. freecycle has local groups.
It's not easy, we know from experience, but it is possible. My wife's first electric chair cost us £200 and that took literally months for us to save up for.
I would suggest as you are here phoning the Scope advice line on 0808 800 3333 - they should be able to let you know what you are entitled to.
N.B. It is an entitlement, not charity, we pay Tax and NHI so that people who need stuff like wheelchairs get them.
Both have their advantages and disadvantages and so I like the analogy of a pair of shoes, as when thinking about which aids to use or take out with me I think about how I will get to the venue, the access inside the venue, what i will be required to do when I get there etc and pick my outfit, shoes and aids as required just as you see office workers who have to wear heels for work travelling in their trainers then changing into their work shoes I mostly travel in my wheelchair then can sometimes walk around a little inside so either push my chair (if I take my manual) or use my crutches for support until I tire and can no longer stand.
I do consider myself to be a wheelchair user as I use my chairs in the same way i would use a bike or a cup or even a car to preform a specific task, in this case to replace the function of my legs to aid me to traverse the environment around me.
Both my chairs are functional and for the most part meet my needs and I try to get them to look as attractive as possible but do they represent my personality, not really, have I adapted them to better meet my needs yes in so far as adding cup holders, bags, cosies to help keep me warm etc - but in an ideal world I would like a fully fitted corset style seats that can still recline for better lumber support, I would like much better suspension, and as I have two dogs it will sound stupid but the ability to interchange wheels for muddy fields or formal work functions so that I can have one frame with interchangeable units to suit the task I wish to partake in rather than having to have separate chairs for each function, especially as I become more reliant on my chair with each passing year.
I was told if I lost weight and 4" off my hips, I'd be reassessed for a narrower chair allowing me to get through a standard door (its not a bariatric chair, just the exact width of a door so I can't quite fit). I pushed myself to lose the inches and they've told me I need to lose more. They keep moving the goal posts.
I have to self propel as I don't have an adaptable property to be allowed an electric chair.. I can't afford to move house, not to mention a housing shortage in my area.
At 16kgs I have what's deemed a "light weight" chair, but it doesn't seem it.. If I want a 5kg chair, I need to save up and buy it myself. At nigh on £2k for a chair, I'm going to be saving for ever.
I'm currently trying to get an old 2nd hand sports chair so I can continue with my love of archery, there just isn't the funding/grants out there..
When I was using a manual the main functional issue that wasn't considered at first was how easy is it for a carer to use. I had to go back to nhs for a "clinical assessment" (which I would advise anyone looking to get a chair even for PT to ask for), to get a chair light enough and easy to fold for my Mum to put in my boot. I did care about looks too and when I went to buy a chair (urgently needed to replace NHS broken one before a holiday) I chose the colourful, 'designed' looking chair. I often get 'wheelchair envy' when I see someone to in a good looking chair, although my 'quickie salsa' is not bad.Main functionality issue now I would say is compactness for getting round house, shops, trains etc.(maybe second to comfort).
From this forum, I think it's interesting to see that form/look, function and price are all key considerations!
If you have twitter, stay in touch (at)hackonwheels
The cost of customisation is a key factor in why I started #HackOnWheels. It seems absurd that a wheelchair can cost more than a car, and customisation is essential to enabling independence.
Stay in touch with us on twitter (at)hackonwheels!
We're actually running a design challenge at the moment which asks student designers to try and do just that
You can find out more by following us on twitter (at)hackonwheels and on the RSA website here: http://sda.thersa.org/en/challenge/rsa-student-design-awards-2017/phase/rsa-student-design-awards-2017/track/hackonwheels-en
All of this is so true - and really resonates with what other wheelchair users (wheelchair wearers!) experience.
If you're on twitter, keep in touch by following (at)hackonwheels.
It's great to hear about Melody - just shows what the power of community can do!!
They might be able to provide a grant to you or a local archery club...
Wheelchairs are so, so expensive!! Best of luck with saving (and the funding...!) #HackOnWheels is working to make customisation less expensive, and involve wheelchair users in customisation so that we're able to get the right adaptions for us, whatever that might be.
I'd love to see photos of the panels - have you shared any of your adaptations with the community on instructables, thingyverse or wevolver?
instructables.com
thingiverse.com
wevolver.com
Thanks for the info you gave me in your reply to my first post, unfortunately I don't do twitter (all a bit over my head lol) but I am looking at the website link you gave me.
Well you've certainly sparked a lively discussion here !
Mike Spindle, designer & manufacturer of the Trekinetic manual & powered wheelchairs, realised exactly your sentiments when he set about designing his state of the art 3 wheel chair.
Seeing a young, cool, fashionable lad in an antiquated wheelchair was for him, the pivotal point and he decided wheelchairs needed to be brought into the 20th century.
6 years after sketching the design on a boarding pass, he was able to bring the Manual Trekinetic K2 to the market place. Since then, he has developed the GTE, a powered version of the K2 and, to our knowledge, the ONLY powered chair that is liftable and will fit into almost ANY car.
We (Beyond The Boundary Wheelchairs) love working with these chairs. They're designed to suit the human shape rather than being L shaped. They are versatile and a great everyday chair with a fantastic all terrain ability and I particularly love being able to see how adaptations can, at times, be made to suit the individual. Having a bespoke wheelchair to work with can make such an incredible difference to an individual.
We're also great fans of Remap who look at what the person needs and does the best to provide it. I recently saw there kindle page turner ....brilliant idea and that is just one of 100's
Keep up the good work Rachael
Are you proposing to
make wheelchairs from scratch that are entirely to the users spec ?
'perfect' chair..... sadly it seems there's always a compromise of some sort. Guess its about working out what your priorities are and looking for the chair that can fulfill them adequately
With the system as it is people often have to choose between a vehicle or a half-decent wheelchair - obviously if on benefits, which the vast majority of us are and will continue to be for the foreseeable future.
I realise that some charities may provide help (as on your website) but going through the means tests required is something we will never do. A friend was asked by an advisor 'do you really need broadband?'
The main items needing attention are cost and functionality. Looks i.e. aesthetics is something that is secondary as good, functional design is often beautiful. Design methodology used to start with function...... and cost is always a primary in business.
You can't make a silk purse out of a sows ear is demonstrated by the attempts to prettify early 20th century designs by some manufacturers.
Open source design would be the way to go. I am sure the Chinese Manufacturers would welcome designs that cut costs and fulfilled functional aims.