“I’m Ruby’s mum.”

Got caught up in a strange situation this last week on twitter involving some parents of people with Down syndrome (and possibly their children) after saying I felt uncomfortable about a young man being directly quoted by his dad as saying something I didn’t think he’d say. I’ve seen him articulate his views brilliantly before, just not in an establishment, senior BBC official type way. [It turns out his dad was quoting from a press statement]. I got a bit of a dressing down by various parents and people with DS.

“How dare you say that?” “Have you ever met him?” “You’re being ableist.”

The conversation unravelled quickly as one father compared tweeting on behalf of his daughter to Boris Johnson having a scriptwriter for his speeches. And then a young person I thought I was talking to disappeared in a puff of fakery.

“I’m Ruby’s mum”, she [her mum, not Ruby] eventually tweeted. From Ruby’s account.

It’s always odd when people have a twitter account in which other people tweet as if they are them. Some accounts make a distinction in the biog stating who the account is run by, or tweets by the named person are tagged in a particular way to make it clear who is actually talking. Some parents simply tweet as if they are their children with DS. And tweet or retweet other stuff on the same account.

Ruby’s mum continued:

“And it’s really none of your business”.

The trouble is, it is our business. By creating a public persona of their children as articulate in normative ways, by erasing their children’s actual voice, they are denying them their personhood. This, in turn, suggests they see their children as problematic. I’ve had conversations with parents who say but it’s important to raise the profile of people with DS (and by extension people with learning disabilities). Yep. Just not by creating an imaginary (ableist) version of people.

Gail captures this in her tweet:

This peculiar practice links to the Down Syndrome Act. A divisive and empty parliamentary Bill which singles out the 40,000 people with DS in England from the estimated 1.1m people with learning disabilities for special consideration. Why do people with DS demand special consideration? The short answer is, I don’t think they do.

The Down Syndrome Bill was fronted by a small group of people with DS who were presented as driving the bill forwards. They endured ‘hug a person with DS’ inappropriateness by countless MPs and certainly showed enthusiasm for the bill. I just wonder if anyone around them took the time to explain that the bill would only be relevant to 2 or 3 of their classmates and not the rest of the children they might have hung out with at school or extra-curricula activities growing up, their friends or siblings, and whether they might think that’s not right.

I don’t suppose they were shown that respect, sadly. It’s the heavily parent managed DS way or the highway.