37 weeks
Delays are a common problem with MS. We delay everyone else when they wait 200 metres up the road because they don’t think that a footpath wide enough to host a military parade can fit both their frame and a wheelchair simultaneously. Other people delay us when the tube is so packed that there is absolutely no way that a wheelchair will fit on board without several people stacking on top of me like a cheerleading routine. And systems delay us all when they are so badly overloaded call operators stop and silently salute at the start of their shifts as they submit to the inevitable waves of unhappy clients.
But this wait is really something.
There is a system in place to support disabled people getting to work. I need this system quite badly. To get to work I usually drive but I share a car with my partner, who is required in the office 3 days per week. So when I don’t have the car and need to be at the University I get the train. But the local station only has step-free access on one side and requires a change of train to reach, so I usually get off at Southampton Airport Parkway and then push my wheelchair, the Rocinante, uphill for 2 miles to the University. I arrive at the Uni, teach for 3 hours, host meetings, and then expire at some point in the afternoon like old milk before freewheeling downhill for two miles to get the train home.
This journey in total is 5 miles in the Rocinante, around 8km, with 1 mile up a long hill.
I can do this. My adventurous ass doesn’t look at challenges like this with defeat but with aspiration. My vigilant part draws her sword and we get to work. When the climb becomes really difficult I hear her in the back of my mind encouraging me, even gently mocking me to spur me onwards. I hear ‘awww, are you done? No? Then let’s get to work.’
We always make it.
But defiance comes at a cost. If the weather is too hot that climb can get very challenging as my legs become increasingly gelatinous. I lose the ability to hold in my gut and my intestines enjoy sudden freedom through the usually firm abdominal wall. It gets harder to vocalise, and each syllable starts to take more effort, like trying to squeeze a sound out of a reedless saxophone. And when I arrive at my destination I still need to teach for hours, which it turns out uses the legs and voice a fair bit.
When it is too cold my hands get chilled on the push rims, giving me chill blains that are little red itchy and painful welts. And if it rains the climb is all but impossible in the chair. Pushing wet rims is like trying to stop mid-waterslide. Zero friction makes forward motion difficult but stopping requires some kind of impact, usually with a parked car, or a helpful saviour, or tarmac.
I don’t like asking for help. I’ve been trained by capitalism to value my independence above nearly everything else, including my physical wellbeing. But I know I am on the edge here. If I injure a shoulder, or damage my chair, or Gods help me relapse, then I’ll be unable to make the journey for a good while.
So reluctantly I decided to ask for help.
There is one system from the government designed to help disabled people to manage work more easily. There is a grant to which we can apply.
I emailed Access to Work.
I know that public sector services are stretched. I know that the basic social contract of life is hanging on by a thread, with house purchasing now the sole domain of the wealthy and ultra-wealthy, with health a premium the NHS can barely afford, and social care being staffed by a handful of incredibly kind people, two nurturing ducks, and a lost pheasant who it turned out was quite good at accounting. And I know Access to Work, the last bastion of support between disabled people and becoming unable to work, is going to be challenging to access.
But they get back to me almost immediately to say that they have accepted my self-referral and that they’ll look into my application as soon as they can…
… in 37 weeks.
So I will hear back, not get an assessment, or help, just hear back, in April 2027. By April I will have completed nearly a whole academic year of teaching. I will have either had more Ocrevus, or been unable to due to lymphopenia, possibly had another relapse, or even seen progression. I doubt that the picture will be the same, that the information I have provided will still be at all relevant.
37 weeks is enough time to grow an entire person. In 37 weeks you can walk to Turkey. In 37 weeks you can grow a crop of parsnips, get a cup of tea, and then grow another.
Disabled people have no options. I have no choice. There is no other system, no second government I can appeal to. I am stuck, waiting.
It is horribly disempowering. Do I complain? What can they do if they don’t have enough investment, enough staff, to keep up at all with requirements? They can’t ask the pheasant to help because she's busy with the social care accounts!
But I am not alone. That vigilant part of me will always draw her sword in moments like this and we’ll always get to work. Solving problems is what we do, and if this is a problem we need to solve, we’ll just have to work the problem. And I have friends and family willing to help how they can.
I gotta say though being disabled is already incredibly hard. Right now I’m struggling in this heat. My right hand has started to fail when it gets overused and just doing the washing up is enough to cause it to falter. The right hand being unable to manipulate objects makes it hard to type, to catheterise, to high five, which given that I use it to catheterise might be a welcome change. It makes it hard to manipulate a fork and I end up gripping it in a fist to eat. I’m tired right now, and it says something about how hard I’m finding things that I’m willing to ask for help. But given how hard everything already is…