Disability

When having fun on Twitter went awry for Brent

Brent Marriner Image copyright Jacqui Tyson

Last autumn, Brent Marriner, a 27-year-old from Sunderland, collected a Chinese takeaway by himself for the first time. He tweeted about his achievement and got more than 10,000 likes and retweets.

The positive response was more than he could have hoped for.

But since then, he has found himself dragged into controversial debates or hounded for what he posts.

Brent, who has Down's syndrome, and his "Mam" Jacqui Tyson set up their joint account @Being_Brent in 2015. Brent wanted to show people that he can do "lots of things" and Twitter seemed the ideal place to share.

"It's a good life with Down's syndrome. Mam and family and friends help if I need it. It's just ordinary," he says.

Much like everyone else, they tweeted about their life in Sunderland - going to the theatre, the tedium of chores, and acknowledging life's little achievements. Jacqui calls it activism by example. They quickly hit 12,000 followers.

But then a more sinister edge crept in. They found their posts quickly becoming public property, which were fought over and used in battles about personal politics.

It started when Brent tweeted that he had put the laundry away by himself.

Image copyright Jacqui Tyson

"Do you want a medal?" one woman quipped.

Jacqui messaged her privately to explain why it was an achievement for him, and the woman immediately apologised. "She was mortified, said she was so sorry," Jacqui recalled. For Brent's mum, that was that.

But some of Brent's followers hounded the woman, even after she deleted the tweet. Jacqui tried to rein it in and said she would deal with any "bother" on the account, but eventually the woman was forced off Twitter.

"The response is a bit like when somebody famous dies," Jacqui says. "People can lose all sense of proportion and kindness and understanding and react in extreme ways.

"With Brent - he's just a bloke who wants to have a nice life."

Brent was fostered by Jacqui when he was six years old, and she adopted him when he was 10. He works part-time in a cafe, performs with a local dance company, and on Sundays he carries the cross at Sunderland Minster where Jacqui is a curate.

Image copyright Jacqui Tyson

The duo had agreed the account would be for fun, not to pontificate on ethical or political issues. Jacqui would type the tweets, as Brent struggles with speech and language, and she would post it once he was happy with the wording.

But the family found they occasionally had to delete @Being_Brent when things got out of hand.

In June, an academic jumped on a tweet by Brent that said he chose his own clothes and hairstyle "because I am a man and I can".

"Do you mean a man rather than a child Brent? It comes across as a man rather than a woman and I'm sure you don't believe that women can't choose their clothes and hair!" the academic tweeted.

A gender politics firestorm erupted and lots of Brent's followers publicly shamed the academic. Jacqui didn't like the attention or what she describes as the mob mentality and felt it necessary to temporarily shut down the account until the furore had died down.

And then there's the emotionally charged debate perhaps most associated with children with Down's syndrome.

"People sometimes try to drag us into the abortion debate and we just won't," Jacqui says. "No," Brent agrees.

The disability world can be very political with strong opinions defended by friends and family who want the best outcomes for the people they care about. Naturally there are clashes, but it's something Jacqui and Brent had not expected when they started out on social media.

Nor did they expect people to assume that Brent must also be a commentator if he'd set up an account and attracted so many followers, but they do.

Recently, as a debate broke out about a new pre-natal test for Down's syndrome, soon to be available on the NHS, activists started to tweet links about the issue underneath Brent's posts.

Image copyright Jacqui Tyson

The Non-Invasive Prenatal Test (NIPT) allows pregnant mothers to find out if their unborn child has Down's much earlier than the current screening process. As it only requires a simple blood sample from the mother, it is also much safer.

Activists from the Don't Screen Us Out campaign fear the new test will lead to the effective eradication of people with Down's syndrome. But others, including abortion providers such as BPAS, say it would be unfair to deny women more accurate information about their pregnancy if it is available.

Comedy actor Sally Phillips, whose son Olly has Down's syndrome, previously said that she and others in the community had been "extremely bruised" by the negative attitudes revealed in the recent debates around screening.

"The message we hear is: 'Everyone would be better off if you were not here at all,'" she says.

Brent's followers expected an answer from him, a suggestion of which way to turn on the topic. Jacqui says that Brent found it: "Sad to think people didn't want babies with DS because, after all, babies are babies. And DS is just DS."

She says: "For him it's that simple. For some people it's not."

Image copyright Jacqui Tyson

It's not just those who want to reduce the number of babies with Down's who cause conflict for the pair. There are a few inexhaustible Down's advocates and supportive followers who, Jacqui says, can also be problematic and make Brent a commodity, rather than an individual.

"They were saying we wouldn't have wonderful people like Brent if DS was wiped out and asking if it was tantamount to eugenics."

She says she's also had to block people who continually added them to lists on Twitter, see Brent as inspirational and only send them articles about Down's syndrome.

"Brent has Down's syndrome, you have lots of friends with Down's syndrome, but presuming that all we're interested in is random people with Down's syndrome… I find that kind of patronising," she says.

"I will block anybody on a comment if it looks in the least bit iffy."

Image copyright Jacqui Tyson

The pair still enjoy Twitter and remain optimistic it's a space to share Brent's experience of Down's, but Jacqui says some of the innocence has gone.

She is regularly contacted by other parents whose children have Down's and are encouraged to see how full Brent's life is. Some have even set up their own Twitter accounts, but Jacqui always gives a word of warning to expect some strife.

Often, disabled people find that whatever they do becomes political to others, especially if they're a member of a minority like Brent.

But despite all the attempts to entice Brent into advocacy, he remains firm that his account is for fun, and he does his own form of advocacy - without signing a petition or using a hashtag - by just being himself and living his life.

When asked if he thought his tweets were, in their own way, changing how others perceived Down's, Brent said: "We don't know, but we hope so."

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