Why loading the dishwasher makes me afraid to open the mail
Fear of Brown Envelopes – a state of anxiety caused by receiving a dark manila DL envelope, with a return address of the Department of Work & Pensions (DWP).
Without exception my disabled friends are united by concern about benefit cuts, often worrying about bad news. At Christmas bonus time, or when the new tax year starts, people tweet to remind each other not to panic when something ominous and brown lands on their doormat.
Many disabled folk are also scared of being “reported” – programmes like “Saints and Scroungers” and “Benefits Street” don’t help the public perception. Even if it is completely unfounded, when a report is made (by someone hiding behind anonymity) the disabled person’s benefit claim is re-assessed. Why, if we are legitimately disabled, do we fear re-assessment? For that, you need to consider the difference between Disability Living Allowance (DLA) and the newer Personal Independence Payment (PIP).
Many people with a long-term condition which is unlikely to improve, like me, are on an ‘indefinite’ DLA award. When I was assessed, it was awarded on the basis that walking 50 metres – while then sometimes was possible without mobility aids – would be dangerous for me, and/or cause me pain, which needs me to rest and recover as a consequence. I’ve always described this as “the less I do, the better I am”. However, the newer PIP system merely asks whether I can “mobilise” a distance of 20 metres, by whatever means. Of course this lower criterion is intended to reduce the number of awards made, and save the government money. Sod the fact that it’s further than 20 metres to my nearest shop, bus stop or postbox, and I often can’t park within 20 metres of my doctors’ surgery or hospital clinics either.
There are other issues with PIP which are well documented elsewhere; such as the cost to bring in PIP (supposedly done to save £1.2bn a year, it’s actually costing £1.6bn more); despite only 0.5% of DLA claims being fraudulent (according to the government’s own figures) they intend PIP will reduce disability claimants by over 20%; as well as the ridiculous suggestion that 20m is as far as anyone needs to be able to move. So now you can see why many lifetime DLA recipients fear they will not be awarded PIP at reassessment. It is clear that many people will still have their disabling condition, but will lose the support that benefits provide.
And if somebody, maliciously or well-meaning, reports a disabled person to the DWP, that person will be reassessed. Not against the criteria of the award they currently hold, but against the new, harsher, criteria of PIP.
This next comment may sound silly, given that friends, neighbours & even strangers tell me how confident and strong I am – but I too harbour that fear. In fact I thought seriously before writing this blog, hoping nobody with ill-intent is reading. My DLA is my only income – for everything else I rely on my husband’s support. And I depend upon it. Not only is it important for practical things, but I also need it for self-esteem: to validate the fact that it isn’t my fault that I can’t work, that I am in genuine need, that the state recognises this and supports me with a small amount of money (which I use for minicab journeys and extra hours for my PA-cum-cleaner) .
So, when I go out to the corner shop of an evening, sometimes just popping out quickly without my stick, if there’s an unfamiliar face hanging out on the street corner, or a car parked nearby with someone waiting in it, it *always* crosses my mind that they may be spying on me. Waiting for me to slip up. I wonder if my limp is obvious, or if it’s too dark for them to see the grimace on my face or the way I’ve stuffed a fist into my back to keep myself upright through the pain. Watchers don’t know that I’m only going to the nearest shop (less than 50 metres) for a single lightweight item. Or that if that shop has run out I have to return empty handed, because the next shop, just across the road, is too far for me to visit and return from without going back for my stick. And they certainly won’t know how much I’ll have to rest afterwards (after all, nobody sees you behind closed doors, only for the limited time when you’re well enough to get out and about).
Maybe this sounds like a pity party, but I assure you the fear is real. Some day, all DLA recipients will be transferred to PIP, and I’m worried that I’ll be one of the genuine disabled people who will lose out. After all, somebody will, and I have the disadvantage of “looking normal”. And if I lose my highest rate mobility allowance then I lose my entitlement to a blue badge, meaning I won’t be able to park in a space wide enough for me to get in and out of the car door. I’d also lose many other local travel benefits. And as well as the mobility aspect, there are my care needs too – currently I have a wonderful PA who keeps me and my house straight. Without these things I – a strong, independent and often outspoken woman – could end up stuck at home, feeling isolated and increasingly depressed. If it could do that to me, imagine the impact on someone less confident or unable to advocate for themself.
If you’ve read this far, you’re probably wondering what the point of this article will be. Well, this was all triggered by an incident yesterday. I was feeling quite well for a change, and decided to do something productive with the energy. So I loaded the dishwasher, as a surprise for my husband and in an attempt to make the kitchen a little less grungy. It took perhaps a minute to shift a few bowls and pans from the worktop to the machine underneath. Partway through, it began to hurt. When I finished, I had stabbing, burning pain in the back of my pelvis. I went to sit on support cushions, to double dose my meds and rest. It took nearly an hour before the pain had subsided to a point where I could get up again.
One minute of activity. One hour of rest as a result. You can see why physical disability often leads to depression. Then I realised: this happened in private, without witnesses. Nobody else would ever know, they only have my word for it. And because I “look normal”, why would any person who sees me think I am less than able to undertake even such simple routine chores?
So I too, like so many of my disabled friends, live in fear of brown envelopes. This should not have to be the case.
If you have been interested by this article, I encourage you to consider sharing it, and to remember that you can never tell how someone is feeling just by looking at them.