Rita Simons and informed choice

Since everyone else is having their say on last night’s BBC documentary Rita Simons: my daughter, deafness and me I thought I would slip in my tuppence.

Firstly, that I thought the whole thing really demonstrated the importance of informed choices. Every deaf child is different. My sister is deaf and what worked for me didn’t work for her and vice versa. There’s no right “solution” for every deaf child. Parents of deaf children need access to expert, unbiased information to help them decide what’s going to work for their deaf child.

Despite this, throughout the whole programme, Rita was surrounded (intentionally or not) by people who were telling her she must do this or musn’t do that. The worst example was of the “Deaf community” telling Rita that cochlear implants were tantamount to abuse. I felt Rita showed considerable restraint; I would have probably chucked my pint over whoever said that, for their tactlessness and insensitivity towards a mother dealing with raw emotions.

(I put “Deaf community” in inverted commas because it wasn’t representative of the Deaf community I know or want to know)

She was also given information by professionals that was incorrect or misleading. I’m not an expert, but it’s not inevitable that children with Pendred Syndrome will lose all their residual hearing (I say this as someone with Pendred Syndrome myself). And not everyone with a cochlear implant is going to be nattering away on the phone. Cochlear implants are not a cure for deafness.

It was a shame that Rita didn’t get the opportunity to speak to more deaf young people with slightly less extreme views or to see how deaf children fare in mainstream settings. Whether this was by design or just the producers looking to make good telly, rather than balanced telly, I’m not sure. It was also a shame Rita also seemed oblivious to the information and resources available by the National Deaf Children’s Society whose reason d’etre is to ensure parents like Rita are exposed to all the facts and information they need. Their statement on the programme sets out the importance of informed choices far more eloquently than I ever could.

And more importantly it was a shame that other parents of deaf children might have been left with a skewed view on the options for their child. A real shame.