wheelchair - A Latent Existence

What you should know before pushing a wheelchair

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 lined up, 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.

This is not how you should talk about disabled people

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.

No wheelchair for you!

I wrote back in March about the death of the power wheelchair that I had been given and my quest to obtain a new one. It was old but it served its purpose in letting me go further from home and use public transport without requiring another person to push my wheelchair. Since my ability to walk is fairly limited I do need a wheelchair when I am out of the house. There are four ways that I know of to obtain a manual or powered wheelchair.

The NHS
Lease one from Motability using the mobility component of DLA
Buy one
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?

Inaccessible world

After publishing my film “A short film about pavements” this morning I have already had people suggest that I should not use a wheelchair on those paths because it is not designed for them, that I should rely on family or my local church to take me to where I need to go, that I simply want the government to spend more money that we haven’t got to fix the problem, and that it is bleeding heart socialist to ask for things to be made accessible for everyone.

So what was my point with the video? What do I want?

First of all, accessible buses with low floors. This is a reasonable adaption, and in fact a legal requirement by 2015. Unfortunately it takes time to do, and my local bus companies do not think it a priority to implement on the route that goes through my town.

Secondly, I would like broken pavements to be repaired and grass, mud and hedges to be kept back from the path. I can put up with a rattly bumpy ride, but where there are holes in the ground that necessitate my 86kg wheelchair being lifted out of after getting stuck, it’s quite reasonable to ask for it to be filled in.

Thirdly, I would like dropped kerbs at corners. In three examples in my film there are corners with no dropped kerbs, some quite new. At best this is negligence, possibly incompetence. These ramps should have been built in to start with. They are not a special requirement for wheelchairs, they are also needed for baby buggies, and people that have difficulty walking, and even just skateboards and roller skates. I’m sure there are more examples. Where corners have been built without dropped kerbs, these need to be fixed. It’s not an optional extra.

Why do I want all this? If we have no money, why shouldn’t I settle for being driven to the doctor, the pharmacy, the supermarket etc by volunteers from my local church, or by family members or friends? Big Society in action?

First of all, there is no guarantee of getting a volunteer. When I make an appointment with the doctor, I can’t check if there will be someone free to take me there a week or a month ahead. I can’t be on the phone to the doctor’s receptionist and the local church at once, arranging a mutually convenient time. And I have no idea if my father will be available to drive me during the working day, a month ahead.

Then there is the fact that it should not be necessary! I have a powerchair, there are buses, there is a walking route that goes where I need to go. (And is used by other people.) I should be able to use all these things.

I don’t have a car. I am too ill to ride my motorbike. I can’t afford the taxi fare at £17 for a round trip. I can’t walk to the bus stop and then walk around town afterwards. I need to take my wheelchair with me unless I’m not walking anywhere and not standing when I get there. Admittedly, I am going to apply for Disability Living Allowance which will help towards travel costs, but DLA is to be replaced by the much harder to get Personal Independence Payments, and that is going to withdraw support from many people on the basis that disabled people no longer need so much help because everything is accessible now. Everything is NOT accessible now.

I don’t want charity. I don’t want embarrassing reliance on other people. I don’t want to have to beg for help, or to feel like I am an inconvenience, or that I am causing problems by dragging my family or friends out of work to take me to places. I should be able to go there myself. I can go there myself. If only the council and the bus company did their jobs.