What it’s like to be non-speaking in a verbal world
Repeatedly being called the wrong name and dismissed by medical professionals are just some of the things that happen when you are non-speaking and misunderstood in a verbal world.
Maqymseahe Ninces – whose first name is pronounced Mackenzie – was at a specialist appointment when the doctor kept referring to her as Kendrick.
After a while, Ninces corrected the doctor with her name and the doctor responded: ‘‘OK, Kendrick.’’
Ninces’ caregiver sat in on the appointment trying not to laugh, while she became more and more frustrated.
‘‘I felt if the doctor was too busy to listen to me and not willing to respect my identity, the doctor was probably too busy to give me the best medical advice,’’ said Ninces.
During another GP visit, she needed to get a transport exemption that would allow her caregiver to drive her despite being on a restricted driving licence.
The doctor was speaking to the caregiver, but when the caregiver told the doctor to ask Ninces about the requirements for the medical certificate, he replied: ‘‘She wouldn’t know.’’
Ninces had brain damage at birth which caused cerebral palsy. She said it ‘‘significantly impairs’’ her posture, body movement, coordination, swallowing and speech. She uses an augmentative and alternative communication (AAC) device to communicate.
She is also an ambassador for the Talklink Trust, which is an organisation supporting disabled people to find communication solutions often through AAC.
Last year, Talklink had 3000 people using its services and 1800 new referrals.
As part of her role as a Talklink ambassador, Ninces does a lot of advocacy work for AAC users.
‘‘People with complex communication needs have the same needs as anybody else: to be heard when they speak and supported to be able to communicate using their chosen choice of communication,’’ she said.
AAC users come from all sorts
of backgrounds and have all sorts of disabilities, she said.
It’s important to get to know the person and their preferred styles of communication because there is no one-size-fits-all approach for AAC users.
‘‘Understand that I am a human being,’’ she said. ‘‘There are times when I don’t communicate to the best of my abilities. I need prompting and I need honest feedback to help me to continue to learn and improve.’’
She said while AAC technology helps her communicate, other people need to understand too.
‘‘I only truly have a voice if other people give me the opportunity and time to respond.’’
‘Talk to me’
Maqymseahe’s advice on reducing barriers when communicating with people who use AAC devices:
I use AAC so that I can speak for myself, please give me time to respond to you; I can show you how I communicate; tell me if you don’t understand what I am saying; be patient; silence is OK – don’t fear silence; talk to me, not my support person or parent.
For more information, visit talklink.org.nz.
This role is Public Interest Journalism funded by NZ On Air.