Genetic testing for deafness, my view. 

The cause of my deafness has never been something that has bothered me. I have a sister who is deaf, but aside from her everyone in my family is hearing.

Growing up with my sister, neither of us dwelled on the reasons for our deafness, we just took it in our stride. I don’t even recall us having any memorable conversations about our hearing; we just plodded on, going to audiology, speech therapy trips together and taking it all as being part of our “normal” existence.

So when our parents took us to a centre in Nottingham for genetic counselling, this felt like just another mundane test that we had to do.

I remember the specialists looking at my hands, my hair, my eyes. And I remember feeling overwhelmed when I was asked if I wanted a cochlear implant and bursting into tears.

It turns out my parents were told it was down to a faulty gene that they both carried which produced deafness in myself and my sister.

No blood tests were taken, so no exact gene was named as the cause of this but I do remember being told “if you marry a hearing man, you’ll be more likely to have hearing children…”

Fast forward twenty something years and I am married to a deaf man and I have a son who is hearing and a daughter who is deaf. Both my husband and I knew that there would be a chance our children may be deaf, but this was never a huge concern to us. We are who we are and our children will be who they are born to be.

So earlier this week when I was asked by my daughters audiologist if they could have our permission to send her for genetic testing, my immediate response was “why?”

I was told that the test would (probably) tell us the exact cause for her deafness and also work out the chances of her passing deafness onto her children. She’s two years old and we’re thinking of her children already?! 

They then mentioned something about her hearing brother possibly being a carrier if the deafness is a genetic cause, and said how he could be tested in future too.

Now, I completely and utterly understand why parents may want to screen for health conditions / illnesses, but I do not feel that deafness is one of them. I am deaf, so my views on having a deaf child may be entirely different to a hearing parent who is faced with something completely new and unfamiliar.

But deafness is my familiar. And for all those involved in my immediate family, it’s our familiar too. So I do not see any real reason or benefit for finding out the medical reason for my daughters deafness. Her deafness will still remain unchanged. And whether she has deaf or hearing children, they will be accepted.

Browsing literature online, I noticed that I’m not alone in these feelings. The American Journal of Human Genetics surveyed parental attitudes towards genetic testing for paediatric deafness and stated,

“Deaf adults had a predominately negative attitude towards genetic testing for deafness, with the majority stating that such tests would do more harm than good.”

It reasoned that as the majority of deaf children were born to hearing parents, it was understandable that these parents were searching for a reason for this unexpected event. Just like my parents were.

That is not to say that deaf parents don’t participate in genetic testing (they do!) but more often than not the reasons for doing so stem more from curiosity than anything else.

One of my concerns about genetic testing was how the results would be received by hearing parents.  Some of the parents surveyed stated that the results of the genetic testing would impact their decision to have further children, with adoption being an option rather than

 “risk having a child who is deaf.”

This concern was echoed in the article by reports from the deaf community expressing their fear that an increase in genetic testing would lead to a decrease in the number of  congenitally deaf children.

Action on Hearing Loss actually completed a genetics testing project in 2012 with the results being published in the American Journal of Medical Genetics. They stated that;

“The project will help to determine the deafness genes that are the most common cause of deafness in Europeans. This knowledge is currently lacking and will also aid the development of treatments in future.”

A new idea I also came across was how most (62%) of the parents surveyed wanted prenatal screening for deafness to be offered. This would (apparently) enable an expectant parent to be better prepared by learning sign language or researching hearing loss.
But wouldn’t a prenatal screening also carry a risk of affected pregnancies being terminated?

It’s a deep and complicated topic and the concept of eugenics, of manipulating a “perfect” human race is one that makes me feel highly uncomfortable.

As a culturally Deaf person, I don’t wish to make my daughter or any deaf child feel that they have less of a right to be here than a hearing child. I believe very strongly in the social model of deafness as opposed to the medical model which tells me I’m broken and need fixing.

Even the NHS website states that it offers genetic counselling to couples where both individuals have a “hearing impairment.” This is in order to determine whether they will have a “hearing impaired child.” Are we going back to the time where deaf people were discouraged to marry for fear of continuing a deaf race?

I suppose I hadn’t realised how deeply ingrained my Deaf identity was until I came across this subject. And it’s clear that there are mixed views about the testing being carried out.

But this is my view. And I do not want my daughter being poked and prodded at the age of 2 for a cause that I’m not sure I even approve of.

Genetic testing for deafness; for who’s benefit?

You can read the quoted article here:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1287942/

Advertisements

My first year as a ‘deaf playground Mum’

When my son started nursery last September I dreaded the compulsory ‘standing in the playground with other parents.’ Not because I dislike people, of course. It was the fact that I’d be expected to chat to / get to know the parents of my sons classmates for the remainder of the school year. 

Talk about being out of my comfort zone. To begin with I remember feeling self conscious, quiet and not really myself. 
To most parents making small talk and general chatter in the playground is fun, laidback and an enjoyable rite of passage. It’s a chance to speak to another adult for a fraction of your day and find some solace in the stresses of parenthood. 

But for me, it’s exhausting. Having to lipread, notice what’s happening around me AND keep track of a 2 year old and 4 year old leaves me feeling hyper vigilant and on edge. 

But verrrrry gradually I got the hang of it. As time went on I came out of my shell and began to feel comfortable with being surrounded by non-signers on a daily basis. 

I’ve done a lot in a school year. I’ve learnt most of my sons school friends names, conversed with several parents, attended kids’ birthday parties and struck up friendships with a few ladies too. Not bad for the only deaf mum in the playground…

Looking back, though, there was a pivotal moment that changed things for sure. It was the first time the other parents saw me with a sign language interpreter. 

We (the parents) were invited to a meeting about phonics and the school had booked an interpreter so I’d be able to participate in the talk. The look on the parents faces when I walked into the room, sat opposite the interpreter and began signing, was priceless. 

Oh, she’s deaaaaaaaf. I could almost feel the pennies dropping. 

I reckon some people had their suspicions beforehand, a few already knew (but hadn’t seen me sign) but most were clueless. 

There were a few friendly smiles, some stares and a couple of flummoxed faces. The following day, one of the Dads (who had previously never spoken to me) came up and started signing, “I heard you’re deaf. My uncle is deaf so I learnt to sign for him.”

Woweee. I thought. Finally I can sign to somebody!!! 

Admittedly, there were a couple of parents who began to avoid me, not wishing to make eye contact and generally acting frostily around me. No more hello’s from them, I noticed. 

And then on the opposite scale were the ones who overcompensated, rubbing my arm before speaking to me and slowing down their speech to aaaan extreeeemely diffficcculllt speeeeed toooo liiiipreeeeead. Bless ’em. 

But generally speaking, once it was ‘out’ that I was deaf AND a signer, it felt a whole lot easier to be myself. I seemed to attract the right people to talk to, some who knew sign, some who didn’t; but overall the good eggs who were happy to get to know somebody who was a bit different.

You know, making new friends as an adult is hard. And I find it even harder being deaf. I know there’s no rule that says you have to be friends with the other parents at school but it isn’t a nice feeling to be standing on your lonesome while others chat around you. 

And as my son begins a new school this September I face the prospect of starting all over again. Meeting new people, explaining I’m deaf, asking their names – several times – and still getting it wrong. 

I found out last week I’d been calling a girl ‘Millie’ for the whole school year when her actual name is Amelia. I’d called another Mum Sara instead of Sandra and I’m still not sure what my sons teaching assistant is called… (Mrs Dutsvord, Mrs Tutsford, Mrs Tuxford?!) so I’ll have to do my research before writing the end of year thank you cards… 😉

I’ve had whistling hearing aids, moments of completely misunderstanding people, and I’ve also had days where I’ve buried my head in my phone because I was too tired for strained interactions. 

But it hasn’t been all bad. I’ve met some really lovely people who I wouldn’t have known otherwise and my confidence has definitely grown. 

Because I’m so used to being around deaf people it’s been extremely insightful and such a learning curve to find myself interacting with hearing folk every day. 

I’ve realised that despite not always feeling 100% comfortable, I can do it. I can hold conversations with others (however brief or stilted,) I can say or wave hello and more importantly I can just be who I am, lip reading stumbles and all. I don’t wanna be friends with the prejudiced bad eggs anyway. 

And that’s the attitude I’m going to need in September when I begin this journey all over again. 

Wish me luck! 




Why being resilient is so important if you’re deaf…  

I do believe that having a dis-ability of any kind means that you’re either born with or develop a set of innate skills to get you through life’s inevitable challenges. 

I’ve always said a sense of humour seems to go hand in hand with deafness. That and a whooooole lot of patience. 

But the quality that I’m thinking of that’s the most relevant here is resilience. The actual definition of it is 

“The capacity to recover quickly from difficulties; toughness.” 

Becoming aware of my own resilience is not something that I was spoken to about as a child. But the notion of having to bounce back from let downs and overcome problems became a familiar one from a young age. 

Getting through the insecurity of deafness when with hearing peers, dealing with bullies, struggling with communication and social interactions; these are all common scenarios for deaf children. 

But like they say, what doesn’t kill you makes you stronger right? 

Ha. I don’t feel strong at the moment. I’ve had a stressful week and I feel far from resilient right now. All I’ve been hearing/seeing is the word NO. 

“No, your daughter can’t have support from a teacher of the deaf; no, we can’t repair your hearing aid as you need to be reassessed and NO we will not renew your access to work support.”

Give me a break. 

I know that dealing with difficulties means breaking problems down, prioritising and making a plan of action. But when you’re being told no so many times and there’s no room for negotiation, there’s only so much positivity you can muster. 

Which is why I’ve been biding my time, gathering my energy and becoming objective about the situations I’m in. Resilience isn’t all about go go go and do do do, sometimes it’s pausing and breathing so that you feel strong enough to try again. 

I’m trying again with Access to Work but I’m in limbo land at the moment. I’ve been told my renewal for support has been rejected so I’ve sent it to be reconsidered and I’m awaiting a decision on that. If it’s another no, I need to go higher and speak to my local MP perhaps about how I can be supported if access to work are not willing to help.

It’s ironic that given how hard it is for deaf people to find good work, you’d expect support to be put on place immediately without a hitch. But nope. There’s a whole bunch of rules and points and a criteria that the advisors have to meet. 

And fortunately after pestering (what feels like) a hundred people, I’ve finally secured a Teacher of the Deaf & specialist support for my daughter. Even when so called professionals told me that she “didn’t meet the criteria for support.” This will be the first battle of many, I’m sure, but I’ll be ready. 

I am tired of fighting but I refuse to give up. Activists of any type are bound to experience despair and anger but they don’t lose sight of what they’re trying to achieve. Even if it means taking a few days off from it all to regain some perspective.

That type of wise resilience; of knowing when to pause and when to pounce, is something I really hope I can pass onto my children. Because with all the challenges, closed doors and NO’s in this world, I think they’re going to need it.  

The Boat and the Blue by Sinfonia Viva: an accessible show for the family 

I was recently invited along to an accessible showing of a performance called The Boat and the Blue, which with its live music by Sinfonia Viva orchestra has won an award for the ‘Best Family Event’ at the Family Arts Festival in 2016. 

It’s a storytelling adventure with live music, games and visuals and by attending the show you also get a CD and the book of the story to take home.

Being a mum to two children under four, I was keen to see how having a BSL interpreter would ensure deaf children could participate and enjoy the show as much as their hearing peers.  

The interpreter, Sarah Gatford, was stood on the far left of the stage, next to the screen where the live visual images by artist Eleanor Meredith appeared throughout the tale. This placement was ideal to see both the BSL translation and the live drawings on the screen. 

Across the stage were the musicians with their flute, cello, violin and bass drum. The storyteller and writer, Jack Ross, was centre stage. He spoke calmly and clearly to the audience  and was especially clear for me to lipread. 

The production told the tale of a little girl who takes a journey to the deep blue sea, meeting frogs, ducks and whales. Both Jack – the narrator – and Sarah – the interpreter – used the same actions for the animals the story introduces. 

All of the songs had actions too! I found myself ribbet-ing like a frog, climbing up sails of a boat, heaving a rope and pulling silly faces. The movements were all enhanced by melodic tunes and great rhymes. 

The sound for the show was amplified by speakers that faced out to the audience, and with it being such an intimate setting the music was clear for me both audibly and physically. I was interested to know that Sinfonia Viva are actually the East Midlands only professional orchestra and have even been nominated for a Grammy. 

The translation of the musical score was outstanding, with the rhythm of each song personified perfectly by the interpreter. There were no delays, no stumbles, it was flawlessly in sync with the singer and dynamic to watch. 

At one point the interpreter had to translate the overlapping strings of a violin, depicting the tale of a sad swan. Her body language, expression and soft fluid movements captured this beautifully, even demonstrating through sign the high tones that I cannot hear. 

Noticing how mesmerised the children in the audience were and how delighted the grown ups looked (myself included) I cannot rate this show & its accessibility high enough. 

I usually find shows are either mainstream with an interpreter that doesn’t quite gel or very deaf-centred but without the sound quality for hearing people to enjoy it. But with The Boat and the Blue the interpreter became an another visual element that enhanced the whole show, and fitted in seamlessly. 

Hearing audience members also commented on how much they enjoyed the BSL translation, and I noticed the children’s gazes fixed intently on the signing too. 

When the production ended I found myself humming tunes, along with their action signs and wishing there were more shows like this I could take my children to. 

I spoke to the head of the orchestra and found that although they don’t have any other BSL shows planned, if there were any I wanted to attend I could simply email them and they’d find an interpreter for me. 

I never knew that was an option! I assumed that accessible shows only appeared on the access page of theatre brochures. But it seems that some programmers are willing to respond to requests. It’s possibly not the same for all theatres but if in doubt, ask anyway. 

To find a truly accessible family show is a rarity and to see one that is of the quality of The Boat and the Blue is even more special. 

Check out http://www.vivaorch.co.uk and see what else they’re up to. And if there’s anything else you like the look of, find out if they can provide access too. 

You never know till you ask.