Interview: youth worker Donna Ware on 'hidden disability'

The theme of this year’s Action for Brain Injury Week is seeing the ‘hidden me.’ It aims to raise awareness of how hidden disabilities can make day-to-day life more challenging and ask for more understanding and respect for seemingly invisible disability.

Some young people are left with life-changing effects after a brain injury that may not be immediately noticeable.  We spoke to Donna Ware, who’s a youth worker in the Psychosocial Team at The Children’s Trust, about how this affects some young people, as part of a series of features during charity Headway's Action for Brain Injury Week.

What do you think are the biggest challenges of a disability being hidden?

I believe it’s other people’s perceptions of the young person.  After a brain injury, for some young people their risk taking is so much greater.  They may have no inhibitions. Looking at the way they respond with emotions like anger, they can automatically just be labelled as a ‘naughty kid’ because they're ‘kicking off’ or taking risks. So, it’s about educating members of the public, and other professionals about the reasons behind the behaviour.

Just because a young person looks able-bodied, the injury in their brain may see them sometimes respond inappropriately or go out late at night and take a risk, or abscond from home, whatever it is. It's about making sure we just don't go ‘oh, they're just being a teenager’ or label them as ‘bad.’ Actually, there's a lot more to it.

Also, lots of people in society, if they don’t get the response they are expecting, they will automatically not try to engage with the young person because they feel or think that they might not be able to understand their communication. I think we have to model how to do this, so people understand, so that people are not frightened about engaging with people with non-visible disabilities. 

Likewise, if young people go back to school or college and have contact with other services, like medical services or social support, it’s educating other professionals that these are the impacts of a brain injury. 

What support do you give young people to handle these issues once they leave The Children’s Trust? For example, what tips or strategies can the young people themselves and their parents use? 

When we do care packages for going back into their home environment, I know that we (the psychosocial team) put a lot of emphasis on hidden disability.  It’s part of the brain injury education that we do. 

There are some young people using assistive communication devices, so they will have something on there that says: ‘I have a brain injury, please be patient with me.’  Some young people also have cards with similar wording written on them, such as ‘please speak slowly, I have a brain injury,’ depending on what their communication needs are. So, for example, if they are in a shop and they go up to the till, they can hand it over to explain.  

Often our therapists take young people out on outings in the local area, so they might go to a supermarket, coffee shop or garden centre and the young person will go to order, and they'll often give them the card. It’s like the sunflower lanyards during COVID when people had badges if they were allowed not to wear a mask for a hidden medical reason. 

I've often spoken to young people and said, ‘do you want us to speak to your peer group?’ ahead of them returning to school, for example, so we might then actually go in and speak to all their peers. We’ve done this on video calls, and we’ve gone into schools to talk about how pupils and teachers can help this young person.  We explain how they do look the same as they used to, but what their injury has resulted in. And we explain how their peers can support them.
But then there's other young people that don't want any of that. It’s difficult because not every young person wants to draw attention to themselves, especially as a teenager when you don’t want to stand out, you just want to slot in. But it also brings knowledge that can help because people then become aware of it. 

It’s about doing what the young person wants. Sometimes you get families that say ‘well, we want them to do this’, but the young person is going ‘I don’t want that.’ As a youth worker it’s my role to explain what the young person wants.  It can be difficult when you have got young people that are non-verbal, trying to get across what their views, wishes, wants and needs are to their parents, who know them better. But, sometimes they don’t as young people will discuss something with me that they wouldn’t speak to their parents about.  So, it’s trying to make sure we advocate for them as well.