Hope is the thing I have found hardest to hold on to during this pandemic; when the basic things of every day life feel like a right, and everything changes, it’s hard to sometimes recognise those things as a one time privilege. Platitudes have dominated our lives since last March; you know those annoying phrases I mean. ‘Turn the tide’. ‘Self isolating’. ‘Quarantine’. ‘Lockdown’. ‘A new normal’.
That last one is the one I struggled to swallow or get on board with most. A flippant, glip remark of a politician, it seemed to have no route in reality – especially when it came to lacking to support. (Hello, furloughed workers! Hello, the arts! Hello, nurseries!) Besides, it just covered up a lacking response to a deadly virus – and accountability seemed to have no meaning, reason, logic any more.
After Covid-19, I worry that there will be no place for someone like me. The constant observance of the rules is exhausting, only to become infuriating when you see your next door neighbour violating the rules. The so-called ‘debate’ around masks is downright disgusting. Some aids I have relied on have come to mean nothing, having been co-opted by people who want ‘out’ of restrictions that could save their lives and others.
Let me present; the manifetso for ‘A new normal’ – the Autistic version.
Firstly, if you have something to say – please just say it. It is hard enough trying to guess intentions, but there has been so much disinformation, false promises, even lies when it comes to dealing with Covid-19. We would save so much time by just ‘speaking straight’ – not to be rude, but to cut to the chase, the point of what you want to say. No “I’m fine” when you clearly are not, complete with passive aggressive sighing. No ‘manning up’. Have a good cry if upset. Go on. It cleanses the soul. Just say what you actually mean, dammit, and stop using fancy language to dress your intentions up.
Accountability will be restored, alongside the agility to have a conversation of nuance. We are all allowed to ask questions. It is not “disrespectful”, or something to be punished; people of all ages are allowed to be curious. We learn that way; our culture of correction of Autistic people has got to stop. Everyone will be held to the same threshold, regardless. I spoke to another client recently, and we seemed to agree that Autistic people are held up to a far higher standard. Nobody is a saint, bar the actual saints as deemed by the Pope – so can we stop treating people like they should be? Thanks.
Care means to care – and not that people who have a disability will be subject to potentially unlawful DNRs. To even happen, even be contemplated, was a disgrace. To have a ‘disability first’ approach is seen as revolutionary – but makes more sense to business. It does not need justification or ‘inspirational’ stories. People matter. Life matters. Economy over people is not working – and has actually hurt the economy even more, according to the I.
Adaptations, accessibility will be engrained in every design, every building. This has no bearing on the space of people who have no impairment. It should not be an issue any longer. I am tired of having to justify my space and why I ‘own’ it. Self advocacy is a privilege that not everyone has.
And if that makes me a justice seeker, a warrior? I believe in a better world. My platform is not just for me, and is a form of empathy to make space for others. We have come so far, and we have all questioned our existence after a year in lockdown. To me, to live is to live alive – to stand up, to speak up, and to stand tall while doing it. And to make every day count.