The following is a breakdown of what my DLA (Disabled Living Allowance) gets spent on. Since many people are confused as to why I’m eligible for it in the first place, and words like ‘lazy spounger’ and ‘refuses to work’ get thrown around a lot, I thought it was time to shed some light on the matter. For the record I have two jobs, it’s just that most people are quick to brush off anyone on benefits as unemployed and apathetic. I receive the lowest DLA care rate (£21.80 a week) and the lowest DLA mobility rate (also £21.80 a week). I qualify for this thanks to my Asperger’s, Dyspraxia and a history of mental health issues. As my old boss was so fond of saying when we did autism awareness training ‘Gwen went to the two for one disabilities sale and bought to full set!’
I hope that by sharing this information I can clarify just how important it is that people with disabilities receive the right support, financial or otherwise. DLA isn’t some kind of special advantage that hard working neurotypicals miss out on. I only qualify for it because our ablest culture has put me, and so many others like me, at a disadvantage to begin with. N0w, here’s what my DLA gets spent on…
I’m currently on 20mg Citalopram tablets, which I take every day, and pay roughly £17 a month for. Citalopram is a basic antidepressant which reduces my anxiety, low mood and sensitivity to sensory stimuli. A couple of years ago I was also on Quetiapine, an anti-psychotic that helped me deal with meltdowns. I no longer require this medication (partly because the right dose of Citalopram keeps my mood pretty stable) and hope that I never require it again. In addition to the mental health stuff, I also take a standard Ventolin inhaler (the blue one) for my asthma, which cost me about £7:00 and needs replacing every time it runs out.
Fiddle toys help me reduce my anxiety when I’m out and about by keeping my hands busy. I struggle in shopping centres and other crowded areas due to sensory overload. Toys give my touch sense one simple thing to focus on, enabling me to tune out distressing sounds, sights and smells. I mostly use them when I’m at work, on public transport, in a bar, at the supermarket or any other crowded area. I have something called a tangle toy, which is basically a twisty piece of plastic rope that cost me £5:50 and breaks easily, meaning I have to replace it often. Technically they’re made for kids, but I know a lot of autistic adults who use them to manage anxiety. I also have a small owl plushie that cost me the same amount, and often stroke the it’s fur as a self-soothing mechanism.
At £3:50, this is probably the cheapest and most essential item on the list. I use ear defenders to help me with sensory overload when I’m out and about (depending what mood I’m in, I can also play heavy metal on my I pod to drown out any other noise). At work, I’m warned whenever the fire alarm is going to be set off and given enough time to put on my ear defenders. If I heard this noise without warning, at full volume, it would likely send me straight into a panic attack.
Practice Journeys and emergency taxis
The most expensive item on the list, as I’m sure you can imagine. I find new places very difficult to find and new environments very difficult to acclimatise to because of my sensory issues. So when I have to get used to a new environment (for example: when I started my new job) I go on lots of practice journeys first. My support worker accompanies me the first few times to make sure I don’t get lost, then I go on my own. This strategy works incredibly well for reducing anxiety and helping me prepare for change, but it costs a LOT in bus and train fair. I currently pay £107 a month for an M Card and try to use public transport whenever possible, despite the huge risk of sensory overload when I’m somewhere like a train station. However, there are times (particularly when I’ve had a bad melt down or panic attack) when I just need to get home fast, and would not feel safe around others. That’s when I pay for emergency taxis. Luckily the taxi drivers in my area are pretty relaxed about meltdowns. They’ve never stared at me or screamed ‘DO YOU NEED AN AMBULANCE?’ in my ear like people tend to do when I meltdown on public transport. They’ve just gotten me home safely. But they’re not cheap.
Each item on this list is essential to managing my stress levels and maintaining my health and wellbeing. That makes my DLA a necessity, not a luxury. I do work, and I use that money to live off, but I’ll still be screwed if I lose my benefits.
An update on my PIP story: I’ve received the results of my assessment and will be publishing a blog post sharing them (and examining various flaws on the assessment system) on Monday.