Last week, two articles on Limping Chicken made an impact on me. SignHealth’s research showing the lack of access to healthcare for deaf people and Jen Dodds’s brilliant call for unity are both incredibly relevant to me right now.
I’ve been an admin for the Spit the Dummy Facebook group campaigning for a BSL Act for just over a year.
I was there from the beginning, and I’m the first to admit the beginning was chaotic. Now I think the name was even more appropriate – at first we were like the proverbial toddler, spitting out their dummy and running around screaming randomly for attention.
Here’s Donna’s article in BSL:
The group soon grew up though and developed; we’ve even smoothed back our hair and put on a suit – or in my case some nice jeans – to help the BDA and other organisations lobby MPs just two weeks ago, not to mention several campaigns, all thanks to our members, without whom we couldn’t exist.
The videos on the group speak to the lack of access for deaf people in everyday life, from education to health to employment. The fact that such evidence keeps on coming even a year later is testament to the number of issues faced by Deaf people.
Yes, we focus on BSL, because as a language, and as an integral part of a culture, it’s been pushed down for too long, and deserves better, and so do the people who use it.
However, I am fully aware that not every deaf person uses BSL.
I didn’t start out as an admin / erstwhile campaigner for Deaf rights, I didn’t become a BSL poet overnight. I grew up in an oral environment, went to mainstream school, ‘spoke well’, used radio aids, and didn’t learn BSL until I was 19, at university in Preston.
When I saw the Deaf community there, I fell in love instantly, even if I didn’t understand it when I found it, I wanted to be a part of it.
My mother is also profoundly deaf. She was diagnosed at age 7; her family had suspected something was amiss, then one of her brothers turned the radio up to blaring while she was standing next to it – she didn’t even blink.
She grew up in a hearing family, went to mainstream school, and has stories about the really old-fashioned huge hearing aids (one to a bra cup…!) and had no contact with the Deaf community until she was well into adulthood.
Yes, my mother is deaf. No, she doesn’t sign. She knows a few basic gestures and home signs that we used to communicate when I was little that still survive today but she freely admits that “cat sat on mat” is her level of fluency. At home, we communicate in speech and gesture and it works.
It works at home. Not so well in hospital. In the last six weeks, Mum has been in hospital twice, the first time for a chest infection that turned out to be swine flu, leading to an immediate transfer off the elderly care ward and onto an isolation ward.
I think it says something for the difference in attitude and willingness to help Mum communicate that she actually preferred the isolation ward; even during the first week when no-one apart me and Dad was allowed in without a mask.
I think the fact of wearing masks made them more aware they had to try harder and more willing to write everything down, whereas on the elderly care ward, the assumption seemed to be if Mum was looking at them when they said it, she must have understood it, because after all her notes say ‘lipreads’…
Then, early last week, she was readmitted with another infection, which had this time spread to her blood. Cue a stay on the acute assessment ward and a drip.
Once again, we found deaf awareness lacking; I caught one nurse speaking loudly into Mum’s ear because it didn’t have a hearing aid in it and she assumed Mum’s hearing would be better that side. Actually, she just wasn’t wearing her hearing aid and didn’t even notice the nurse doing it.
Despite that, she managed to get through the last stay without any major hiccups – until it came time to leave. The nurse spoke to Mum. Mum thought she understood and nodded. The next thing she knew, she was being packed up and expected to move.
It turned out that while Mum was scheduled to leave that evening anyway, an admission had come in and they needed the space now. The nurse said this to Mum. Suffice to say, that’s not what Mum understood. When I came to get her, she was sitting in the day room, annoyed and miserable.
That’s not including the time she asked me to go find her doctor and speak to him because whilst he’d come to talk to her, she hadn’t understood a thing.
When I found him, he was actually nice, but I could see why Mum couldn’t understand him; his voice was clear enough but his lip pattern was unusual, enough to throw off any lipreader.
He was happy to type on his computer screen for me though, and soon started writing things down for Mum. I found him helpful, but I also found that generally, levels of deaf awareness varied.
The first time round, we asked for a lipspeaker every day, from the time we arrived in A&E. Every time, a nurse would smile and say they’d look into it. Every time, I would come back the next day and no-one knew anything. Then she was transferred to isolation and compulsory masks, where there was no point.
The second time round, we didn’t even bother.
We’re currently working on a letter to PALS. It will be long, and reasonable, and express our disappointment at the clear lack of deaf awareness that runs through the system.
I hasten to add that I cannot fault their care; both times, Mum improved significantly, and left looking much better than when she went in. It’s just the deaf awareness that needs work. Mum experienced a simple misunderstanding about moving off the ward; it could easily have been about something else, and much worse.
I feel strongly that deaf people need to support each other; we experience the same barriers, whether it’s me with BSL and some speech or Mum with speech alone, we hit the same barriers, just like all deaf people, whether we speak or sign, we still hit those damn barriers.
We need to support each other; my Mum deserves better than this – we all deserve so much better than this. All of us.
Donna Williams is a Contributing Editor for Limping Chicken. She is a Deaf writer and blogger living in Bristol and studying part-time in Cardiff. As well as being a postgrad student, she’s a BSL poet, freelance writer, NDCS Deaf Role Model presenter, and occasional performer. She tweets as@DeafFirefly
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