Tempted to complain about ableism and poor medical treatment? Good luck

How d’you take on the Grand Prix of life when you’re driving an East German Trabant?

If you’ve never seen one of those, YouTube will help. Or watch Netflix’s Kleo (it’s pretty damn good). That’s because the Trabbi, the communist car powered by a lawnmower engine, is a metaphor for my battered body.

Disabled people like me are faced with taking Trabants out on to the racetrack while individuals and organisations stick tacks in the tyres and kick in the windscreen. Sometimes this is done by the very people who are supposed to keep the thing running: medical professionals.

“You should complain then! Complain! Let ‘em have it!” That’s what people say – but does it actually work?

I’ve done it countless times, most recently over the type one autoimmune diabetes care I wasn’t getting. Appointments were repeatedly made and cancelled and then I was left with no appointment at all for what remains a very serious condition with a myriad of complications.

The message, I’m afraid, from a crisis-wracked NHS, often sounds very much like this: “You’re on your own, however serious your condition.” Time to write a letter (because “free at the point of need” ought to matter). So I did – and I finally got seen and was issued a piece of kit most T1s already have, but not before being told I couldn’t have it unless they could get “real-time access” to everything I do to manage my condition via an app.

That’s right: after flipping me off, they wanted me to accept a 1984-style telescreen on my phone. Time to write yet another letter? When I’m also dealing with legs that don’t work properly, constant, debilitating pain and barely any sleep?

But then I saw this from a disability activist on Twitter: “Whenever a disabled person talks about discrimination I always see the same thing written over & over. ‘You should complain!’ I’m here to tell you that you have to stop doing that (telling people to complain). Please. I beg you. Because you’re not the one that has to go through what that means.”

The writer went on: “It’s almost 11pm and I’m broken. I can’t stop bursting into tears. I’m drowning my deaf ears in the loudest music possible just to try and drown out the thoughts and the mental torment.”

And I immediately understood. I thought: that’s me.

Here’s the problem with raising a complaint: it thrusts you right back into the maelstrom. It forces you to relive the car crash. And the consequences of that can be very nasty.

Being treated as sub-human because your brain and body don’t work in the same way as other people’s does bad things to your head. Being treated as a nuisance sends you to dark places. You find yourself dreaming of the incidents you’re complaining about. (It’s called PTSD. Take it from someone who knows.)

Taking huge healthcare institutions on takes grit and mental resilience. And you simply may not feel up to it. That’s not your fault.

Sure, sometimes complaining works – and works best when there’s some form of regulatory body. This means they’ll probably have to log your complaint. Too many of them, and they may get a critical report; even incur fines. Their CEO might have to face questions on the Today programme.

There’s always an ombudsman service, if the complaint isn’t resolved satisfactorily. They are typically free for the individual to use but expensive for the institution. Their decisions also tend to be binding on the institution, but not on the individual. You might even win.

The trouble is, it’s exhausting and stressful even to approach an in-house complaints function (step one), let alone going through the same set of hoops a second time with an ombudsman. And what if your complaint is not easily resolvable? Such as everyday ableism, the sort of discrimination or abuse not covered by watchdogs of one sort or another?

I was pleased to note that my local council, Redbridge, responded when I tweeted about being abused for exercising using a wheelchair, something which roused the ire of a group of aggressively entitled dog owners. Having some ageing ableist thug tell you that “you’re lucky you’re in that chair” – a clear threat – is something that gets in your head.

Redbridge wanted me to submit my experience to the antisocial team so it could be recorded and looked into (and… what?). I’m still debating whether to do that. I’m wondering whether it will make any sort of difference. Plus, reliving it isn’t a lot of fun.

Better to keep the bust up Trabbi that’s me on the road. No matter what it takes.