I read with great interest this piece on Gradient Lair, the intersectional black feminist website and felt compelled to respond.
In many respects I feel great sympathy for the writer because she did what many would do, see a person struggling and try to help. Many people with disabilities like me regularly experience object fury. There will be inevitably at some point in your day an object that does something you don’t want it to do.
Inevitably these objects fall into one of three categories. They will fall on the floor, they will get tangled, or there will make a mess of you. A bit like the Andrex puppy, ever defeated in their quest for toilet paper emancipation.
When one sees such a struggle the natural psychological reaction is to try to help, and it is a bit of a chicken or egg situation. When you don’t need help, people will fall over themselves to go out of their way to help you, but when you do they will be nowhere to be seen.
I understand the writer’s reaction completely. It is bigger than agency though. People with disabilities are generally characterised as weak and feeble and lacking in agency from the outset. Bur some people with disabilities lack of agency is an uncomfortable truth. But for me I feel lucky that at least the agency I lack in my body can be made up for with the agency in my brain.
The scenario the writer describes is actually a common one I have faced many times before. Whenever you enter any public service customer facing building there are inevitably chairs. But we have to remember that whilst for us they can be cumbersome and unnecessary experience (I have been known to joke that I have my own seat thanks) they are necessary for the majority of the public and we have to be considerate to that if we do not want to live in a separatist utopia.
Over many years I have become a mistress of moving chairs. It requires a simple push or the act of trapping the chair in between your foot plates depending on where you actually want to move it to. It can be a slow and painfully long spectacle for the able-bodied viewer to watch. In fact I’d probably recommend popcorn.
However one thing you must be alert to is disabled social conditioning. Almost from the moment we can talk, one word is drummed into all of us regardless of sex gender or otherwise. That word is independence.
What I really mean by introducing the word independence is this. Imagine the scenario of a middle-aged man trying to scoot into the computer desk. What if there was nobody around? How would he then manage?
He may have other things to do with his day and may not have time to wait for assistance to become available. So then what do you do? The answer is that you rightly have to find your own solution. Whilst these solutions may look clumsy and difficult to the average viewer sometimes these solutions are our only method of survival.
To give another example I am always dropping my headphones and phone, and yet these two objects are the things I depend on most, in order to maintain my safety and reduce my vulnerability if my carer is on her break. She is entitled to a break for three hours per day. So during this time either I have to manage outside on my own, which I’m capable of doing or I stay inside alone.
So again what I expected to do if I drop these objects in the house? Do I wait for my carer to come home? No because I need these objects now not in a few hours time. Therefore I have developed a kind of “fishing rod” technique where I use the long wire on both the phone charger and the headphones to winch them upwards. The good news is it works!
Similarly outside, I always carry drinks with me to keep myself hydrated and I always drink out of plastic bottles with sports tops as I am unable to manage cups. When I’m out I use a straw. The sports bottles come clubbing though.
Another tip we are taught at Disabled School is to be nice to the public. You need good Samaritans in order to be self-sufficient even for just a few hours. I would never ask of the general public to do really intimate personal care, but I am not afraid of asking them for help to get drinks out of the staple carrier bag which resides on the back of my wheelchair. I always say please and thank you, firstly because my granny told me “manners maketh man” and secondly because I believe it makes a massive difference to people’s willingness to help. It is 1% kindness and empathy and 99% attitude on the part a disabled person. I loved my granny and my manners.
When I was in college, there was always a cacophonous noise of wheelchair horns. People would say can you move? Can you move? No please and no thank you. In wider society that attitude does not make friends nor influence people. Even in a clothes shop the other day, I moved aside for someone to let them walk past with heavy bags and they didn’t say thank you. I didn’t notice they hadn’t until my carer remarked upon it.
A big bone of contention for me is public transport. I have lost count of the number of times I have struggled getting onto the bus and people have refused to get out of their seats in order to allow me to manoeuvre into the wheelchair space.
They sit there blankly as if they are plants growing roots who are incapable of moving. I normally have a moment of internalised expletive in my brain and I have bumped into people sometimes. But my conscience is clear, because I always give them adequate warning of my manoeuvre.
If you think the inconvenience of moving out of a seat is the worst inconvenience you’ve ever had to face like evah, then I’d love to change places with you.
All this said though I would not have responded to the writer of the Gradient Lair piece in the way Middle Aged Man did. I would have probably said “no I’m okay this time but thank you for offering anyway,”
Particularly when you live in a place and you know people quite well and are well recognised you might not need help that time, but you never know when you might need their help again. So if you respond politely as above people are more likely to respond helpfully as they will remember your previous courtesies. Women do tend to be more attuned to such things. It’s not a stereotype I’m talking from personal experience and that is why I am grateful for the role women play in my life. The local police are also great at helping if I need it.
But you know, where we can achieve something which may look small to you, it may be gargantuan to us. But the resultant sense of achievement is therefore also gargantuan. It is better to try and fail and ask for help, than to not try at all. Also you must know your limits as the anecdote I’m going to end on will prove.
I use a trackball mouse to operate my computer. This means all the control is retained in the fingers and the mouse itself does not move at all. All the control comes from the ball.
What happens though if the ball falls off? Well firstly the obligatory “oh fuck” then secondly the ball having a similar kinetic energy to a marble, rolls around until you can’t see it any more.
My care was on her break so I called my neighbour who has a spare set of keys in the house in case my ball falls off. (Not really, it’s for emergencies but this sounds funnier in the context of the piece bear with me.)
We looked around the house, in every corner of every room. We couldn’t see it anywhere. So she scrambled on the floor and turned over the sofa. It wasn’t there either but of course I can’t use the mouse without a ball. So I began to contemplate the price of a new trackball.
There was however a happy ending. Guess where the ball was? In one place we hadn’t looked. It was down the side of the wheelchair. Talk about schadenfreude!
So don’t worry too much about taking away our agency. I will always thank you for trying to help anyway. You never know you may be my elusive good Samaritan when everybody else has refused to help for two hours. It has happened before and I’m sure it will happen again. So chair mover your intentions were good. Every person with a disability is different too. Not everybody will have the ability to take control of the situation. We always need you the able-bodied on our side. If I don’t need you I will thank you using my independence and agency.