Being disabled has its downsides.
I know this will come as a surprise to many of you, but it’s true. Once you’ve got over the cool mobility accessories and free parking, it’s actually not so much fun. So much so that I genuinely struggle to understand why all of these supposed ‘benefits cheats’ who apparently just stay at home eating and counting their piles of gold even bother. Trust me on this, working is easier.
I appreciate that, in order to stop people just claiming whatever they fancy, the system needs to be rigorous. But as a reasonably intelligent human being, with a couple of degrees, I’m slightly overwhelmed by it all. I have no idea how anyone manages to fake claims, as they’re a total nightmare to do when they’re actually legitimate!
What seems to come as a surprise to many, is that there is no ‘Register’ which you join upon becoming disabled. Similarly, there are no t-shirts, cute badges for the Tube, or trolley coins. That’s probably a good thing. Registers are for school kids and sex offenders (which is an awkward combination, actually). I don’t want to be listed as ‘different’. I don’t want people to be able to look me up, or to be categorised simply because of some dodgy collagen. But I could do with a guidebook. Something handed over with first diagnosis; “Here’s what you need, and are entitled to, just tick what you want and we’ll send it through.”
Of course it’s not that easy. No doctor (especially these days) has time to do all of that. They have so little time, they’re generally in Acute Renal Failure thanks to dehydration. And Social Care, while full (in the main) of people who really do want to help, is so totally underfunded that they can’t pick it up. Besides, different disability things come from different people. The council does a lot, the government does other bits, NHS and Social Care take on the rest (as ever). So us wonky ones are stuck with a pile of paperwork.
I hate forms. I particularly hate having to find all the evidence for the forms. Completing one form can take hours (which I tend to spread over months). So here’s my methods:
- Be super organised. Have anything that may be supporting evidence in a folder. That includes Rent Books, Council Tax documents, letters from consultants, letters from university and student finance, utility bills, bank details, the works. Put it all in one folder, and if your house burns down, forget photos of loved ones or your mobile or your cat; GRAB THAT FOLDER. Simple.
- If you are not super organised (ahem), be comfortable with phoning up helplines and bartering identity documents with them. Wandsworth Council deal with my Blue Badge and Freedom Pass, but want different address-confirming documents for both. So I have a Blue Badge, but haven’t got the documents for a Freedom Pass. A mere 20 mins on the phone to the helpline and now all I have to do is visit my bank (over 30 mins away by bus), enclose a copy of a deed poll certificate, and I *may* get my ‘Magic Oyster’ as I shall forever refer to it. Sigh.
- ASK FOR HELP. In my Blue Badge assessment, I ended up being told that I should, and how I should, apply for Personal Independence Payments. I thought that as a working person, I wouldn’t get these. I now possibly can, when I do the form. My OT found me a wheelchair hire company to use when I want to go to some gigs before my chair is ready. My Disability Officer at Uni is BEGGING to help me fill in a Disability Student Allowance application (the most nightmarish of all the forms). People know it’s a nightmare system. They want to help. Ask them to.
- Be a bit cheeky. If you’re not sure you’ll be given something, ASK ANYWAY. I have written to so many charities asking for help funding a wheelchair. Most have said no or sent me another long form, but that’s progress. Shy Bairns Get Nowt.
- JUST BLOODY FILL IN THE FORMS ALREADY. I can leave them stewing for MONTHS. But the best way is to pour a large glass of wine, sit down and crash through as much as you can in one sitting. Yes, we all have better ways to spend an evening. But at least there’s wine.
- Tell the truth – you don’t need to be weeping nightly, or unable to leave the house. You don’t need to have a ‘visible’ disability. Be honest, ask nicely, and you’d be surprised what people will do to help you, regardless of how ‘able’ you are.
- If you really need help – look up your local Citizen’s Advice Bureau. Yet another incredible institution that the government is desperate to get rid of, they help people work out what they’re entitled to and help them get it (which is presumably why the govt isn’t a fan). They LOVE forms. My mum used to work for them. She’s got good handwriting and everything.
The hidden cost of being disabled isn’t always financial (though printing costs for all these forms and documents alone are getting silly, and don’t start me on the walking stick habit). It takes forever to work out what you can get, apply for it, and then sit in meetings being judged as to whether you’re wonky enough. It’s also a bit emotionally exhausting. No one *wants* a Blue Badge. But they may need one, and that’s a tough pill to swallow, especially if you’re younger. It’s certainly not something anyone wants to have to fight for.
In the end, the only person who really understands a disability is the person living with it. Just the same as our able-bodied friends, we’re all totally different (and not the money-grabbing homogenous mass the right-wing media loves to make us out to be). Given the right support, we too can achieve amazing things, sometimes even better than our less-wonky colleagues. We bring things to the table others can’t. As long as the table is accessible.