Giving birth is an overwhelming experience. You feel joyous, exhausted, thrilled, desperate, excited and terrified all at once. One thing you cling on to in those early days is the reassurance from other parents that all babies do this or that, that it’s nothing unusual, that it’s just a phase. I can’t imagine how much more extreme all those emotions must be if you don’t get that reassurance; if instead you’re gradually facing the reality that your child isn’t the same as every other child and this isn’t going to change. How would you cope, for example, giving birth to a child who is both deaf and blind? That’s what I kept asking myself on a recent visit to the extraordinary Anne Wall Centre in north London.
Deafblindness is a combination of both sight and hearing difficulties. No two deafblind children are the same, and because of their complex conditions, many also have physical or learning disabilities. The Anne Wall Centre is there to support deafblind people and their families. It is an extraordinary place, every conceivable space crammed with art rooms, cooking areas, trampolines – you name it. One room is a kind of sensory chill-out zone, with crazy light shows and soundscapes to heighten the experience of whatever limited sight or hearing you may have. I could have stayed in there all day – in fact, I suggested they should hire it out for parties, but apparently that’s not quite the point.
During my visit, I was lucky enough to meet some of these wonderfully unique children and their parents, as well as the highly skilled professionals who support them. It’s an awful cliche to say it was inspiring, but … it just was. Utterly. The parents I met described the centre as a lifeline: their visits to it were not just highlights in their week, but indispensable ones.
I witnessed first-hand how these children can learn and achieve with the right support. A person who works one-to-one with a deafblind child is called an “intervenor”. This is a highly trained professional who enables a deafblind child to connect with the world around them and learn tactile communication. With intervenor support, a deafblind child can learn, play and develop as much independence as possible while growing up. This support is vital for deafblind children to overcome the isolation caused by deafblindness, offering opportunities to develop in our hearing and sighted world and learn language. Watching a deafblind child learn by touch as they feel the intervenor’s hands is like watching a beautiful ballet. It is remarkable.
I’ll confess that before I visited, I found the prospect of discussing deafblindness scary. As a claustrophobic, the thought of being trapped in a dark world, unable to communicate or be communicated with felt like the worst nightmare imaginable. What I learned was that, through the skill of these expert intervenors, deafblind people can communicate, and be communicated with. They can learn to write and paint and cook and clean and lead fulfilling lives.
So I am shocked to learn that most deafblind children are being left without the professional support they need to develop language and make sense of the world. These children are truly unique and it is estimated that there are 4,000 in the country. Research by the charity Sense shows that just 10% of deafblind children have been identified by local authorities, meaning that nine out of 10 deafblind children are left without any hope of intervenor support. And even for those children lucky enough to be identified by local authorities, only three out of 10 are getting the intervenor support they vitally need.
I’ve met some parents of deafblind children and they really are incredible. I’m sure they will never shirk from their responsibilities as parents – but they cannot do it alone. On 12 November, I’ll be supporting deafblind children and intervenors in parliament with the charity Sense, where we will speak to the Department for Education’s Edward Timpson. The message for him and for the government as a whole has to be that, deficit or no deficit, deafblind children desperately need intervenor support. Surely, as a society, we cannot leave their families to cope with these challenges alone? And we cannot leave these children unable to connect with their world.