Living with an Invisible Disability 101: Joining the conversation – #thingsdisabledpeopleknow

I’m proud to know the amazing disabled activist Imani Barbarin.

Smart, funny and incisive, she’s worth following if you give a damn about what’s going on in the disability space. Which we all should be, because most of us will experience disability at some point in our lives, one way or another.

Recently Imani started a hashtag, #thingsdisabledpeopleknow, and it has gone viral.

Check it out on twitter.  You can also hear her interview about it with the BBC, and/or read the transcript here:
https://www.bbc.com/news/av/disability-47000390/why-the-hashtag-thingsdisabledpeopleknow-went-viral

Of course I had to stick my own oar in.
Because, don’t I always?
Here’s my contribution:
“No matter what qualifications you possess, no matter what you have achieved in life, society is only interested in seeing you in one of two ways: you’re either ‘inspirational’ or ‘someone to be pitied’.” #ThingsDisabledPeopleKnow

To this, a financially struggling friend remarked, ‘It seems this way for the economically disadvantaged also’.

Me: Yep, The ‘rules’ of Capitalism. Rich = ‘good person’; Poor = ‘bad person’.
BUT another issue entirely.  But also one of the #thingsdisabledpeopleknow

On employment, or the lack thereof, for people with disabilities, I was also moved to respond to Dr Mel Thomson last week on Twitter, who wrote:
“I’m totally disillusioned by lip service given by many organisations about employing people with lived experience of disability. I’m literally high functioning enough to work 40 hour weeks…with a short commute. But the only company willing to discuss my capacity is @Deloitte”
Me: “I so hear that. Postgraduate degree here.
If I try too hard to work they threaten to cut my DSP and my medication costs spiral out of control. I’d need a job paying at least 80K a year to make it worthwhile. With flexibility for my bad days.

Once I walked into Centrelink and DEMANDED they give me access to a job provider.
They sent me to a sheltered workshop for the intellectually disabled.
My last ‘real job’ was in 1983.   But yeah, go ahead, world, and call me ‘lazy welfare scum’ …”   #thingsdisabledpeopleknow

Then there’s one of my closest friends, an immensely accomplished artist, writer, sailor and world traveller, who just happens to be quadriplegic.

“Many years ago I was invited to a death and dying conference as the ‘disabled representative’. Someone had assumed we were suffering grief from our ‘loss’ of ability. Anyway a lot of this weekend was about people wanting to die in their own homes … I pointed out that this was all very nice but most disabled people simply want to live in their own homes.”

Me: “Ah yes, to them disabled lives just aren’t worth living! Have you been following the crip resistance to assisted dying in several states? Some of them are saying the legislation could easily be used to just bump them off under the guise of ‘compassion’. An interesting viewpoint I hadn’t previously considered.”

My friend: “Hmmm compassion comes in many guises …”

Me: “In this case, Eugenics! Anyhow, any ‘grief’ I personally experience is related to being shut out of society and not being allowed to reach my potential.   My physical condition is beside the point. Sure, there are things I can’t do. But there are also many things I can do.  Why is the focus always on the former instead of the latter? I mean, as a general rule, men can’t carry babies,  but does that mean they have nothing to offer as parents? Where is the sense in this?  #thingsdisabledpeopleknow

More to come no doubt …

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