Today my sister used a wheelchair for the first time. (We share the same inherited mitochondrial condition.) Her husband has little experience of pushing a wheelchair so I tried to give him some tips, which resulted in what I have written below. Believe it or not there is actually some skill involved in pushing a wheelchair and keeping the person in it comfortable. These are just observations from my own experience of being in a wheelchair pushed by someone else, but everyone is different. If you’re pushing a wheelchair for someone new then you should ask them if they have any preferences.
Communicate. Ask if there’s anything you need to know first. NEVER touch or move a wheelchair without permission.
Don’t overshoot checkouts and reception desks. If you are level, your passenger has gone too far past it.
Don’t bump your passenger’s feet into people, objects or walls. Particularly in lifts.
Don’t follow anyone too closely. (See previous point.) Your passenger is closer to them than you are, and seeing backsides that close gets tedious.
Watch out for oddly sloping pavements, especially near dropped kerbs. The wheelchair WILL veer sideways into traffic if you are not careful.
Look ahead for bumps. Dropped kerbs are often not dropped very much. Be prepared to walk a long way around via the road.
Always approach bumps straight on. If you are not straight, stop and turn first.
It can be easier to go backwards over bumps if the wheelchair has large wheels.
Pay attention to the surface you travel over and take the smoother path. Cobbles can be painful or tiring for someone in a wheelchair.
Don’t let the wheelchair run out of control. Consider taking slopes backwards so you can hold back the wheelchair. CHECK FIRST!
If your passenger says stop, STOP immediately. (And, indeed, follow other instructions – see comments below.)
Try going through heavy doors backwards so you can push the door with your body.
Some wheelchairs have brakes operated by the passenger. Never assume that those brakes are on or off, always check.
If someone speaks to you when they should speak to your passenger, tell them so.
Be forgiving of your passenger. They have no control and that may make them grumpy. Wheelchair users: be aware that you might be shouting at your assistant more than you realise.
If you’re pushing a wheelchair very far then you’ll probably want to get some gloves.
Thanks to @knitswift, @chmasu, @missnfranchised, @lisybabe.
Sometimes I just have to comment on really bad reporting of disability. Today it is the turn of Ars Technica, a technology news website that I read every day. The story is about a woman who may have murdered her mother. Nevertheless, her actions don’t negate the harm done by this kind of language:
If it weren’t for daughter Gypsy Blancharde’s posts on Facebook, she would likely be seen as a missing wheelchair-bound cancer patient who survived Hurricane Katrina and who has become a victim of foul play herself.
Instead, the daughter—who can actually walk and was believed to have had leukemia and muscular dystrophy—faces murder charges alleging that she and her secret 26-year-old boyfriend, Nicholas Godejohn, killed her mother Clauddinnea “Dee Dee.”
Where do I start with this?
This woman is, in fact, someone who used a wheelchair. All the rest seems to be assumptions based on the fact that she was seen walking, that she is not “wheelchair bound”. I am also not “wheelchair bound” and frankly, that is a really offensive term. My wheelchair frees me, it enables me.
Wheelchairs are like glasses. You do not have to need them all the time to genuinely need them some of the time. Many people can walk a few metres or even further but still need to use a wheelchair for much of the time. Attitudes like that in the article are what make people call me a benefit cheat and a scrounger when I get out of my wheelchair to reach shopping on high shelves, or when I walk from car door to car boot to get my electric wheelchair out. The same applies to other mobility aids or other help with disability.
Please, stop talking about disability and disabled people in these horrible terms wrapped in stigma and judgement.
My wife was in a motorbike accident a few weeks ago and is currently in hospital with broken leg, ankle, wrists, thumb and fingers. I have a mitochondrial disease which causes pain and exhaustion so I rely on my wife to push my wheelchair whenever I go out but she is not going to be able to do that for some time to come. Until now I have resisted friends telling me that I should ask for donations to buy an electric wheelchair however I am going to be very stuck if I don’t have one over the next few months. Hospital visits, shopping etc will be a big problem. I can’t get a wheelchair from the NHS because in my area the NHS does not give wheelchairs to patients unless they cannot walk at all and need a wheelchair to move around at home as well as outside.
I did have a rather old and wonky electric wheelchair which I bought second-hand with some help from friends. That chair helped me with local trips but it was too bulky and heavy to fit into my car, so I could not go very far in it. Worse, our flat is not wheelchair accessible so I was forced to keep the wheelchair in a shed outside where the cold damp weather this winter has killed it. Spare parts to fix the controller are no longer available.
This is my old, wonky and now dead wheelchair.
Reluctantly, then, I am asking for donations to buy a new electric wheelchair. I want to buy a Karma Ergo Traveller because it is lightweight and can come apart to go in my car or be stored inside my flat. It will give me some independence which will be really helpful even after my wife is recovered from her injuries.
Thank you for reading, and thanks in advance to all of you who donate.
I’ve been thinking for a while about adding a few improvements to an electric wheelchair. Electric wheelchairs are bulky, expensive, run on heavy and dangerous lead acid batteries, and are decidedly behind the times. I want a high-tech wheelchair. I want a hackable wheelchair. In short, what I want is a Raspberry Pi-powered wheelchair.
A Raspberry Pi, if you don’t know, is a small, low power, cheap (£20 – £28) computer that runs Linux and is perfect for embedding in projects. I want to add a Raspberry Pi to allow me to add all sorts of functions. Reversing sensors with an audible alarm. Proximity sensors used to actively steer around obstacles. A light sensor that can turn on the headlights. A WiFi or Bluetooth link to a smartphone to report status. Tires that report when they need air, and batteries that report when there is a problem and when they have finished charging or desperately need to be plugged in. Remote control to bring the chair to you. Pre-programmed routes so that the wheelchair can be told with one button on a smartphone to go to the bathroom / kitchen / bedroom.
Once there’s a computer in the wheelchair the possibilities are endless.
It’s unlikely that a Raspberry Pi could interface with the electronics which control the high currents that the motors need so the standard control unit would have to be swapped for control electronics from the robotics world and the equivalent joystick to replace the standard one. Of course once a computer is in charge the joystick could equally be replaced by voice recognition or an Xbox controller.
My ideal electric wheelchair would have, in no particular order:
Smartphone status app connected via WiFi (Is my battery charged yet?)
Swappable controls that fit in a socket on either arm without endless bolts and cables to move.
Smartphone holder/charger attachment
I’m convinced that this is all possible, and probably not too expensive although any budget at all for this is out of my reach at the moment. There are people out there attempting to improve their wheelchairs, such as the engineer who has written up his attempts at www.wheelchairdriver.com and various attempts based on the Segway. I might just have to make a shopping list and try to find someone willing to fund it.
I have to use a wheelchair for most journeys outside of my home and car. Because I do not need one inside the home I do not qualify for any help at all from Worcestershire Wheelchair Services even though an NHS occupational therapist has agreed that I need it, and I get High Rate Mobility Allowance and a Blue Badge for parking because of my inability to walk. I use my DLA to lease a Motability car and I bought my own manual wheelchair which I can only self-propel about as far as I can walk.
I would benefit greatly from an electric wheelchair because at the moment I require someone to push my wheelchair. With an electric wheelchair I would be able to visit places without my wife. My wife intends to go back to work and I won’t be able to go anywhere without her that requires walking more than few metres from my car. Even the medical appointments will be difficult.
After all the drama detailed in previous blog posts here, here and here I applied to a local charity that provides grants for people in and around the area including helping with mobility. They aren’t a disability charity and so they don’t have a great understanding of my problems. They seem convinced that because they have purchased mobility scooters for several people with my illness, that I should be able to get buy with a scooter too instead of an expensive electric wheelchair. My correspondence with them has dragged on for months since I first applied. When I first looked at a suitable chair to obtain a quote I asked about a second controller which would enable an attendant to operate the chair if I were too exhausted to. (This can happen after a long day.) The charity administrator immediately panicked on seeing this in the quote and demanded that I get my doctor to write a letter saying that I could safely operate a power wheelchair. This despite the fact that I drive a car! I had the second controller removed from the quote anyway when I realised that it cost about £500 extra but they still insisted. Obtaining that letter took three months, after which I was sent another letter which I detail here.
Dear Mr Sumpter
Further to your application for an electric wheelchair, we have now received confirmation from your Doctor that you are suffering from ME and would benefit from a mobility vehicle.
However the electric wheelchair you have requested has been quoted by INDY at £2410.22 [This is the price with 2nd controller] which is greatly above what trustees would normally consider for someone with your health grounds. In similar circumstances they have purchased a Aerolite Scooter in the region of £800 which easily fits into the boot of a car.
In order for Trustees to consider your request we would ask that you obtain a report from an independent Occupational Therapist as to why such a specialist chair is necessary for your condition.
I did contact my NHS Occupational Therapist but she declined to provide such a report. I have no idea where to go to pay for a report or if that is suitable so this is where it has stopped for the last two months. I have already considered and tested mobility scooters. They are unsuitable for several reasons:
My size 12 feet do not fit within the footplate of the more affordable smaller scooters and instead sit awkwardly across different levels of the scooter.
The seats on all the scooters that I have tried do not give enough support to my back, leading to pain.
Stretching my arms out to the handlebars puts pressure on my wrists leading to increased pain, and using the arm rests causes me to slouch forward, hurting my back again.
I would have to leave it outside some shops, which is no good as I cannot stand and walk for long enough to queue or browse the shelves for what I need.
I cannot take a scooter on a bus. They’re not allowed.
A larger scooter would solve part of this problem including footspace and seat height, but would cost more and still hurt my arms and hands. The one I tried was also too heavy for me to lift into my car and possibly too big to fit. A proper electric wheelchair would have a good seat, proper arm support, a controller suitable for the level of pain in my hands, enough space for my feet, would be allowed in shops and other places, and could go on buses.
Since my application I have actually bought a second hand electric wheelchair for £300 but while useful on occasion it is far too bulky to go in my car and the batteries are nearly worn out and will soon require expensive replacements. If this local charity insist they will only pay for a scooter then there really is no point in my getting one. I’ll have to use my current chair until it dies for journeys on public transport and will have to have someone with me to push when I go out in my car. I’ll be writing to the charity with all of my reasons and I will also suggest to them that they purchase a slightly cheaper electric wheelchair, although finding one that is both cheap and reliable will prove tricky.
I use a power wheelchair and every time I visit Spar in Badsey I find that half of the double door is locked and I cannot fit through one side. I always have to send someone else in to find a member of staff with a key and usually have to wait several minutes outside while they locate the key – on some occasions they have not been able to find it at all. At other times I have not had anyone with me to send inside.
Today my wife went inside to find a member of staff but they were serving a long queue of customers and since I was not prepared to wait outside for five or ten minutes in temperatures of 5°C I went home without doing my shopping. This problem would be easily solved by having both doors unlocked at opening time and by not doing so Spar may be breaking the Disability Discrimination Act.
(I have sent a complaint to Spar via their website today.)
Lease one from Motability using the mobility component of DLA
Get a charity to buy one
It should be obvious that buying one is not really an option for most people living on sickness and disability benefits. Many people who need a high end power wheelchair do lease one from the Motability scheme however that option is not available to those who already use their DLA to lease a car through the scheme, or who do not receive DLA at all. In some circumstances a charity might be willing to foot some or all of the bill for a power wheelchair. Specialist charities for certain diseases or impairments might do this although in practice most do not have this option either. In my case there is a charity that helps people in the area that I live in who might be able to pay for part of the cost of a power wheelchair for me but since charity funds must be carefully looked after they require me to need a wheelchair but be unable to get one from the NHS before they will help. That leads me to the main option, to ask for a wheelchair from the NHS.
Soon after my power wheelchair broke an occupational therapist referred me to Worcestershire Wheelchair Services and I was told that I would get an assessment but that I would have to wait a long time. In the meantime I bought a manual wheelchair using my credit card. I have a bankruptcy in my past because of my illness so that credit is at an interest rate of 34% APR.
I knew when I was referred for a wheelchair assessment that I would not qualify for a power wheelchair because I only need a wheelchair when out of the house but that was OK because once I had an assessment I could turn to my local charity. As I understood then from other doctors and therapists I should qualify for a manual wheelchair, although probably one with small wheels that required an attendant to push it because self-propelling a wheelchair soon hurts my arms as much as walking hurts my legs. (This is why I purchased a self-propel chair, since I would like to be able to turn myself around even if I mostly have someone pushing.)
Then, today, I received this letter from Wheelchair Services. (Click to enlarge.)
The letter informed me that I would not receive any wheelchair from the NHS because in Worcestershire they are
“Currently only able to supply wheelchairs to people who meet higher level needs i.e. to those clients who have a permanent mobility problem, who are unable to walk and who require a wheelchair within their own home.”
So, because I can walk or stagger around at home, I will not receive any kind of wheelchair to help outside where I cannot walk more than a few metres or stand up for more than a few seconds – not even a manual wheelchair. They won’t even visit to assess me. There are also many people who need a power wheelchair but are unable to get one from the NHS because they, like me can walk to some extent around their own home. In a lot of these cases they would use a wheelchair inside if only they could fit one in their home, but because they cannot they too are denied any help from wheelchair services. I know of several people who are currently trying to raise funds through donations to purchase their own power wheelchair because of this.
I’m not too worried about this in my own case because I have the manual wheelchair that I bought, and I have my wife to push it much of the time, and I still hope to get help from a local charity. I am far more worried about all the other people who haven’t been so fortunate and have no chance to buy a wheelchair, no charity help, no car and no one to offer lifts. I struggle to understand the justification for the NHS in Worcestershire not giving a wheelchair to people who need one but only when outside. If applied nationally, this policy would trap tens or hundreds of thousands of people in their own homes, unable to go out to medical appointments, to buy food or to visit family and friends. I don’t know how long this policy has been in place in Worcestershire but I hope that it is the only area doing this.
Worcestershire Wheelchair Service informed me that their qualifying criteria have been this way for a number of years due to low funding. Worcestershire is not looking like a good place for a chronically sick or disabled person to live right now; Worcestershire council are planning to remove funding for care at home for a large number of people and send them to live in care homes instead. This is a huge backwards step, a removal of freedom for a lot of people and reverts to the old method of locking those with disabilities away from society. This policy on wheelchairs will ensure that more people are trapped at home and so require care from the local authority, which in turn may put them into a care home.
Are we as a country really so short of money that this is the route we want to take?
I was featured in an article in the Evesham Observer on the 6th of April, Disabled passenger wants action after bad experiences [Evesham Observer], in relation to the A2BForAll campaign about difficulties that disabled people face in using public transport. I was pleased at how the article highlighted some of the problems that I have experienced but I feel that there was too much focus on one particular incident on a local bus service run by Henshaw’s Executive Travel. In this case there was a problem with the ramp which prevented the bus from moving for about quarter of an hour after I boarded the bus.
In other areas I have often come across buses which lack ramps and wheelchair spaces. I have had far more problems with boarding and leaving trains, with pre-booked assistance not turning up on arrival at train stations such as Birmingham New Street, London Paddington and Manchester Picadilly. This makes boarding a train a gamble as to whether I will be able to get off again at the other end before the train leaves. I have particular problems at Evesham station because it is not manned after 12:30pm and so I must rely on train staff to be able to put the ramp in place – that is, if there are staff on the train to assist at all.
I am actually very pleased with the effort that Henshaw’s have made in making sure that the new routes which they run through Badsey use low-floor buses with ramps for wheelchairs. I am very happy with the service which I receive from Henshaws and their drivers are always polite, helpful and ensure that the experience is a good one. I feel that this incident was an unfortunate accident which will not happen again and I would certainly not want anyone to avoid travelling on this bus route because of one incident.
My electric wheelchair broke a couple of weeks ago after going up a too-steep ramp into a train, toppling backwards and then falling forwards fairly hard. That was quite inconvenient, especially when I discovered that the motors and brakes have burnt out and it will cost about a thousand pounds to fix. Since then I have had to fall back on a manual wheelchair, pushed by my wife. I can move my own wheelchair, just about, but it is still painful and exhausting for me. Fortunately I have just got a new car, so I can drive to most places and then use the wheelchair on arrival. Unfortunately, the manual wheelchair that I was given by family doesn’t fold up enough to fit in the back of my car.
I will qualify for a wheelchair from the NHS, and so I have asked to be referred to the local Wheelchair Services for an assessment. I am slightly stuck though. Walking and standing around result in high levels of pain and fatigue for me, as well as leaving me in danger of losing my balance and falling over. Despite this, I can walk around at home most of the time with only an occasional fall. NHS rules say that I can have a manual wheelchair for use outside, but because I can walk around at home I will not qualify for a powerchair even though I can’t propel myself most of the time. In fact, I probably won’t even get a self-propelled wheelchair since moving it myself can cause some pain and fatigue too, so I will end up with an attendant wheelchair, requiring someone to push me with no option to move myself at all. (See page 16 and 17 of this document for the full rules.)
Because a referral to the wheelchair service will quite likely take a few months, (I won’t be a high priority) and because I will probably get an attendant wheelchair rather than a self-propelled one, I bought a new wheelchair yesterday – a shiny new Karma Wren 2 self propel. The chair cost me £279 from a local shop called Indy Mobility. I could have found it slightly cheaper online but the staff at Indy Mobility were very helpful and put up with me for a couple of hours while I looked at all the options. They also didn’t charge me for the work done so far on my broken powerchair.
I was surprised how much easier the new chair is to self-propel than both my old one (and it is old!) and my dad’s one which I borrowed when my power chair broke down. That is partly because the new chair is made from lightweight aluminium but I think also due to it not being worn out. It is light enough that I can lift it into my car myself as long as I am not too tired at the time. It fits nicely in the boot of my car, as you can see in the picture below.
Wheelchairs are one of those extra expenses that disabled people can have which Disability Living Allowance is supposed to help pay for. While chairs are available from the NHS, it is quite common for them to be inadequate or to take a long time to get, even apart from cases like mine where I won’t qualify for a power chair which would help me the most. The Motability scheme which leases cars to disabled people in return for the mobility allowance from their DLA can also lease high-end powerchairs to them but I can’t do that because I already spend my DLA on a Motability car so I have had to buy my wheelchair with a credit card at very high interest. I think there are quite a few people stuck in this situation including Kaliya (@BendyGirl) who is currently trying to raise funds for a powerchair of her own. She really needs one to get around outside – just see her “deathwalk” video if you need convincing. Kaliya could use a powerchair inside as well, except that her flat does not have enough room for one. You can donate to Kaliya’s powerchair fund by sending money with Paypal to firstname.lastname@example.org or visit her blog post about it.
I have a possibility of getting part of the cost of an powerchair paid for by a local charity – the same one which gave me a small grant when I went to university and gave us food money last year when our benefits were screwed up. They require me to have attempted to get one from the NHS first, and so I must wait until I have been assessed before I can do that. I am hoping to take a voucher towards the cost of a wheelchair rather than a wheelchair itself from the NHS so that I can then put that voucher together with a charity grant if I can get one and buy a powerchair. I plan on getting one that is small and light and can come apart to go in my car – my old one weighed 90kg and even healthy people struggled to lift it. Indy Mobility suggested a Karma Traveller 2 which I think costs about £1,700, although I will have to find out what else is available. For now I will just have to rely on my wife to push me.
You may recall last summer I made a video highlighting the difficulty that I had in getting between the village where I live and the local town in the electric wheelchair that I had been given by a relative. Following that video I was informed that a new wheelchair-accessible bus service would be starting up between the two places. Fantastic timing. However, since then, I have been quite seriously ill and unable to even go out in my wheelchair and I have been fortunate enough to have my father help drive me to medical appointments. Today I decided to take the new bus in to town for the first time since it started.
The new bus route 552 out of Evesham and it’s accompanying bus 553 which goes around the loop the other way are advertised as running low-floor wheelchair accessible buses on the timetables and when my wife spoke to Henshaws, the bus company the runs the service, she was assured of that fact.
Unfortunately this is what happened when I tried to board the bus today.
As you can see, it is in fact rather inaccessible for a person in a wheelchair.
The bus driver was very apologetic and tried to be helpful. She explained that the usual bus for that route was undergoing maintenance and that it had been substituted with an older bus for the day. She told us that the 553 which goes the other way around the loop was the usual accessible bus but would take a long time to arrive, and suggested that we could also try another bus that passes through the village, the 247 run by First Group. We decided to try the 247 but the bus stop for that service is actually at the top of the hill more than half a mile away. The 247 also does not use accessible buses all the time and so it was only a chance that I would be able to get on it.
Fortunately that bus was wheelchair-accessible. The bus driver helpfully told us that only his bus was accessible today and told us when we could get his bus back from the bus station. Here’s me on a wheelchair accessible bus for the first time.
So what should I take from all this? Well obviously things are improving. The introduction of a (normally) accessible bus service proves that people are making an effort, and hopefully by the target of 2015 all bus services will be accessible all of the time. However, at the moment travelling in a wheelchair is thoroughly unpredictable. If a bus needs maintenance, no one thinks anything of swapping in a bus that wheelchair users can’t get on. If there is someone in a wheelchair already on board the bus, then tough, there is no room for another one. Other people have told me about problems with getting people to move out of the wheelchair space on the bus, and in many areas the buses are decidedly not wheelchair accessible.
What is worrying about this is that with the proposed Personal Independence Payments under the Welfare Reform bill, it is assumed that because of accessibility laws there is no problem travelling as a disabled person now, and therefore disabled people do not need the extra money to help with travel that DLA provided. This is definitely not the case. Now that I receive DLA I have ordered a car through the Motability scheme and using that will get me to where I need to go reliably and on time, without the possibility of not being able to get my wheelchair into it one time out of ten, or suddenly having to wait for a different car. Clearly the world is not yet equal for disabled people and government ministers are deluded if they believe otherwise.