There’s a hole in my bucket, dear Liza, dear Liza: failures of mobility aides to give independence

I went to an accessibility expo today. It was a bunch of companies promoting mobility aides and other accessibility and disability related equipment and services. While I was there I started pondering something that keeps coming up when I look at accessibility generally, anId for mobility aides for myself… It’s like the old woman who swallowed a fly, or the hole in Henry’s bucket. The solutions offered are often a poor fit to the problem posed, and create new barrier of their own, so another solution is added to solve the problems with solution 1, but that creates another issue in need of solving, and so on and so on. I see it pop up repeatedly, not just in relation to ME/CFS but also in other areas where people try to fit their solutions to our disabilities.*

While I am well enough to be able to go out in the world and participate in life, I want to do so, and I want as much as possible to be able to do those thing by myself. I want to be able to go shopping for my husband’s Christmas present without spoiling the surprise. If I need to travel, I want to be able to do that on my own, if I choose. I want to be able to bathe whenever I feel the need to get clean, and eat whenever I am hungry. I want to be able to pop out to the supermaket on a whim. If the right mobility aides can make it happen, it would be nice to be able to work again, which would mean doing things without an assistant or carer. I want independence and dignity.

For me, the key purpose of mobility and accessibility equipment is independence and dignity, so having to rely on other people to help me operate my equipment defeats the purpose**. If I can’t do it myself, it’s not accessible enough.

We wandered through the stalls at the expo, looking for, and failing to find, a satisfactory solution to my most pressing and difficult issue, independent mobility***.

There’s a hole in my bucket, dear Liza, dear Liza

I am often very unsteady on my feet, I tire if I’m verticle for more than a few minutes, and I often have no strength or stamina in my limbs. I can stand and walk if needed, but I struggle to do either for very long. I tire too quickly to be able to self-propel a wheelchair on uneven or sloping terrain. It’s ok inside a building, as long as the floor is flat (no ramps).

Then fix it dear Henry, dear Henry fix it…

I am married so yes, my husband can push my wheelchair, but consider the difference between this…

Image: holding hands

Or this…

Image – couple holding hands, woman leading her partner from partner’s perspective.

And this…

Image – b&w. Back view of a man being pushed in wheelchair, from just beside person pushing, showing their perspective.

I married my husband because i wanted him as a companion, not a nurse. This means he needs to be free to hold my hand, to walk by my side. With me, not struggling along behind me, while he pushes my chair. My mobility aides need to function without him, so that I can really be with him.

With what shall I fix it, dear Liza, dear Liza?

I do get it, why they don’t have the right thing for me. The majority of wheelchair users will have very different needs to mine, most being far more demanding and restrictive, and compromises are made in the designs to balance those more pressing demands. But my needs are not unusual, in fact, I think what I want in a wheelchair would be pretty universal amongst those with limited or altered mobility needs.

With straw dear Henry, dear Henry, with straw.

Things like shower chairs, tray tables, trolleys and beds are all fine – they serve a simple, single purpose, so even something like a motorised, adjustable bed has limited variation in how it might work, and the design differences don’t greatly alter the basic function from person to person. But mobility equipment on the other hand…

But the straw is too long, dear Liza, dear Liza.

My manual wheelchair is great, and i love that I have it as an option …well, it still has issues, which are always an issue for any wheelchair user – it’s heavy, bulky, too low to interact with standing adults, doesn’t go everywhere, and I can’t carry things like a plate of food and still move around. Those are small but universal barriers for wheelchair users. The main problem that stops me using my wheelchair is that I can only use it inside a building with a nicely horizontal floor (i.e. no ramps or inclines). This means that if I’m going to be outside at all, I need a carer or assistant to push my chair… independence fail.

Then cut it, dear Henry, dear Henry, cut it.

Solution! Motorise those wheels. Ok, cool, I’ll get an electric wheelchair or mobility scooter. Now I can head down the street and go shopping (in accessible shops)…

With what shall I cut it, dear Liza, dear Liza?

Oh, hang on, how do I get from my house to the shops? It is too big to put in the car.

With a knife, dear Henry, dear Henry, a knife.

You can go 20km on it, so you don’t need to put it in a car.

But the knife is too dull, dear Liza, dear Liza.

That means I could only go about or 9km from home… I want to have the option to shopping in other parts of town too, or to travel, so it needs to be able to go in a car.

Then sharpening it, dear Henry, dear Henry, sharpen it.

Try this one instead, it comes apart so it will fit in the boot.

With what shall I sharpen it, dear Liza, dear Liza?

Great! Let’s go…

ooomph… I can’t lift this piece, how much does it weigh?

Oh, that piece weighs 30 kg…

that’s way too heavy…

With a stone, dear Henry, dear Henry, a stone.

There are another couple of options … There’s a front wheel and handle bar that attaches to your existing chair, or these motorised-hub wheels that can replace your existing wheels…

But the stone is too dry, dear Liza, dear Liza.

Oh, but they only go on this style of wheelchair that doesn’t fold for travel, and adds extra bulk to the chair so it will take up all of the boot space, or and fit into a small car boot, like a rental if I’m traveling…

Then wet it dear Henry, dear Henry, wet it.

Try this one. This travel version breaks down to 12 and 17 kg pieces.

With what should I wet it, dear Liza, dear Liza?

Ok, I can lift 20 kg today without any trouble, but it’s still a lot if I’m too weak to walk.

With water, dear Henry, dear Henry, water.

No problem, you can get these hoists for your car…

With what shall I carry it, dear Liza, dear Liza.

So I need to modify my car in order to take this “travel chair” out of the house… doesn’t seem very travel friendly, especially if I can’t throw it in a rental car.

With a bucket, dear Henry, dear Henry, bucket.

Most disabled people travel with a carer or partner so you could get them to lift it.

But there’s a hole in my bucket, dear Liza, dear Liza, there’s a hole in my bucket, dear Liza, a hole.

* A ramp or lift, which can only be accessed through the back door of a businesses so can’t be left unlocked/open, requiring the user to call ahead/use an intercom/send in an able bodied person to request access is another example I regularly observe.

** Many people with ME/CFS can’t even sit for long periods or handle the sensory stimulus of the outside world, which means they have different needs. I am only talking about my own limitations and requirements and the life I would like to be able to live.

*** This is simply an example of how generic accessibility solutions can fail to solve an access problem, but it could equally be applied to any other accessibility equipment or treatment offered to someone with a disability, from medications being piled up to manage each other’s side effects, to unsuitable housing, difficult to use hearing aides, services offered etc.