Do I deserve the help I get? This is a question I’ve been pondering a lot lately. Since putting my back out I’ve had a lot of time to think (not always a good thing for me) and each time I have found myself coming back to this. Do I deserve the help and support I get from the government?
I sat in the garden in the sunshine last week. I had a pile of paperwork to do for kiddo so large that I could have wrapped my entire house in it. But i couldn’t face it. It wasn’t a feeling of laziness. I literally couldn’t face the idea of trying to harness what little energy I had in my brain to concentrate on disability law, equal opportunities and financial disputes. But still, I was sat in the garden at 1pm on a weekday, albeit for five minutes.
I should have enjoyed those five minutes, but I didn’t. I actually hated them. The guilt that rose up within me for not using every free minute kiddo was in school or with his enabler consumed my whole being. Because I’m no scrounger. I’m no benefit thief. If the state is going to support me financially I am damn well using every minute that I breathe to help make kiddo’s life just that little bit better.
That night I crawled up to bed (literally) at 6.30pm. I had pain in every area of my body. I could barely move. I lay in bed praying for sleep to wash over me and take my pain away. And thank god that night it did. Kiddo woke up at 1am as usual.
I sat at 2am in our living room whilst kiddo ran laps of the downstairs singing the 20th century fox theme tune. He was happy, thats all that mattered. I asked myself the same question again. Do I deserve the help I get? And, fairly obviously, in this context my answer was extremely different. Yes, yes and more yes. Help me. I’m exhausted. So why my difference in attitude according to the time of day? The weather even? Because I daren’t let the wider world see me enjoying myself. After all I don’t work, and I receive benefits. I don’t deserve enjoyment right?
I read a heart breaking story on one of my online support forums this week. A member had discovered that she had become a victim of playground gossip, which is one of the most evil things known to a mum let me tell you. Other mums had been accusing her of receiving money she wasn’t entitled to. That her child only had autism and that other people out there needed transplants or had cancer. It sent a shiver down my spine. Because I know that that mum is exhausted. She works day and night to keep her son safe. He runs into roads, climbs out of windows, he doesn’t sleep. She is working at 110% every waking minute, and every minute she’s asleep for that matter. So why do people hold this view that she isn’t entitled?
Because autism is an invisible disability. And the wider world has to see evidence before they believe you are experiencing or suffering from anything. I realised that this is why I can never let people see me enjoying myself. Because they might see me sat in the garden for five minutes in the sunshine and think, “blimey she’s got an easy life. Why isn’t she out working?”. But what you don’t see, thats what the wider world should be considering. It’s what you don’t see that so often means we do need help, and we do deserve it.
The current government have projected a very poor message surrounding those who receive benefits. They want more people back into work and they don’t care what your reasons are for not doing so. Carers and disabled people are being scrutinised and investigated, it is presumed they are guilty of benefit fraud unless they can prove themselves innocent. And for those with or caring for those with invisible disabilities, it’s almost impossible to gain a person’s trust that you are not lying just to have an easy life. And that’s what it ultimately comes down to. Trust.
So if you know someone who cares for a child or adult with an invisible disability, ask yourself if you believe in them enough to support them along the way. If you do, they will be so glad of your support. If you don’t, jog on. And keep your thoughts to yourself. Because I’m telling you now that what that person has had to go through to get a disabled parking badge or carers allowance is more scrutiny than you can manage in a school playground. The government have investigated every aspect of their life. Their medical reports, bank balances etc. So if the government have decided that that person deserves help, trust me. They do. We are not all just in it to get a free parking badge.
Thanks for reading,