Living with an Invisible Disability 101: Infantilisation


‘Infantilise’. One of my favourite words. Happens to me all the time. Here’s just one typical example.  A month ago my pharmacist went through all my medications with me to make sure it was up to date and nothing was reactive to anything else. Then three weeks ago I went through the list again with my GP. And every 6 months my consultant rheumatologist and I go through and review it together as well.

A few days ago a pharmacist I don’t go to (because he doesn’t supply PBS prescriptions – ie. poor and ill people on welfare for whatever reason) but who has links to my GP’s office called me about coming to my house to do a ‘medication inventory’. I presume this means going through my bathroom cupboards to see if I have a stash of out of date medicines and am taking them incorrectly.

Excuse me? I had to argue with him. I have, with the help of my doctors, been managing my Rheumatoid Disease for 37 years. I am not elderly, I have a Master’s Degree and I do NOT have dementia. I do not need some strange man coming into my home uninvited to tell me if I am ‘doing it right’.

Now fuck off and stop micromanaging me and treating me like a child!

Chronically ill does not mean ‘stupid’, or ‘incapable’. It’s unbelievable to me that people who deal with the sick every day still need this spelled out to them.

The infantilisation of the ill and disabled comes with this territory. I see it discussed on social media quite often by Baby Boomers who – for the first time in their lives – suddenly have to use a mobility aid and are aghast at how changed their interactions with the world become because of it.  And this is simply because of the ableist way society views disability.

A smart, respected, person with a brilliant career behind them has an illness or fall and for the first time has to use a walker or wheelchair. S/he suddenly finds younger people are calling them ‘Dear’ and ‘Sweetheart’ and speaking to them in a singsongy voice, as if speaking to a child, or in a slow, loud, enunciated fashion as though they can no longer hear or comprehend normal speech unless it is slowed down.  People in wheelchairs routinely get patted on the head, or tut-tutted to, or pushed around by ‘helping’ strangers to places they did not want – and never asked – to go, or ignored altogether while all conversation is directed towards their able-bodied companion. As if they are invisible. Or embarrassing. Or incapable. Or all three.

And people wonder why we Crips are rising up in anger in ever-increasing numbers. What would you, Dear Reader, do if this happened to you? If every interaction with the world that used to treat you with respect was now conducted through a stinking funk of Ableism? It’s time to think about these issues, to change the ‘inspiration or object of pity’ binary and allow people with disabilities to be what they really are inside: Real People, just as complex, diverse, and full of hopes and dreams as any other.

(Btw the featured image on this post is not my hand, it is from Wikipedia, but it is what RA often looks like. Being a nurse in my previous life, I was smart enough to strap my fingers in the early disease process to keep the joints straight, and to stop pretending it wasn’t happening and keep working – as many expected me to do – with sore, inflamed joints. Otherwise my hands WOULD look like this. It did mean copping accusations of ‘malingering’ and ‘laziness’ at the time from supposed loved ones, but them’s the breaks. At least my fingers are straight.)