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.
mydaftlife 
Thank you Sara.
Making me think and self challenge.
Even interpreting a look or gesture from someone who does not have words is often a best guess, based ( hopefully) on having lived alongside in many contexts.
Yes.
Is there a family who has not been accused by SW (for example) of putting words into adult LD son/daughters mouth. Or who has not suffered the jolt of fear about what this will – may mean – as a further loosening of safeguards and choices. And who has not felt this as a poke in the soul accusation – that we are uncaring; -‘bossy, ‘pushy’ -‘controlling – failing -a failed parent.
Or are selfish – seeking more than a fair share of support.
When in reality we are just scared stiff re ‘what next’ in terms of harm and crises.?
I am old enough to remember when ‘ care in community’ was a new idea and the brutal parodiies of ‘over weaning’ old parents and the stereo typed older DS people – ‘wearing ankle socks and still hugging a teddy’ made by fresh evangelists accusing worn out familes who had suffered decades of nothing support.
The only common factor in homes where is a LD son daughter is that most parents want son or daughter to live a long and good life. And all will give up own joys and hopes to enable this. Most battle this every day.
The common factor here is that all is a battle – for all. Our sons and daughters are all at risk of a too early painful death;all are at risk from incompetence, dodgy systems and sloppy processes. And – ill thought out evangelical ideas like this Down”s Bil – that promise much and will deliver less.
This debate – could be looked at as a jostle by caring, weary, frightened parents to get their child in the last seat on a life boat.
Most of us have all been through the hell that is a post code LA . For older parent there has been the nightmare of the harm done by poor Governance and dreadful decisions made and blamed -most recently on Austerity.
We are all in the same boat. Lets us pull on the oars together ?
This shows the the insidious nature of the DSBill. If I am to be accused of hating my child based on my not championing the DSBill then I will allow myself to reflect on the proponents; how they promoted it and why they rallied behind it.
How? Easy, they did what I fear most.. they shamelessly manipulated a small group of people with LD for their own ends.
Why? I have personal views, arrived at having read their blogs, which I wouldn’t like to air!