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Make your voice heard: Dealing with communication disorders


In a personal account of how a communication disorder has affected her professionally and personally, Wendy Stern offers some practical advice for trainers.

I have written this feature for TrainingZone from personal experience and suggest ways to help trainers manage practical situations likely to affect people with various communications needs. I am an expert on voice needs affecting me from which I offer generic advice which should cover many communications needs.  

To begin at the beginning

Losing my voice in 2004 after a lifetime of a normal voice was a hard blow and the transition to voice impaired has opened my eyes on wider accessibility issues. Until then I never gave my ability to speak a thought or that “voice” is intrinsic to my identity and relationships.

My once beautiful voice was now variously a gravelly, high-pitched, squeaky, breathless or very loud to soundless often with a childlike quality. Poor co-ordination in my laryngeal area led to erratic, unpredictable sound reminiscent of Hal from 2001, a dalek or cartoon characters. I was overcome with grief for my lost voice and shame at an apparent inability to control my voice. Medical advice was to rest my voice, speak as little as possible, not speak on the phone and write instead of speak which I did, hoping to restore my voice. Speech therapy was of limited help.

"We know what we need if you can find a way to hear us … have our selfhood accepted and not our disability is the most important thing.  Some people feel that having a disability kills every thought in your head and with it your place in the community.”                 Joshua Harris, Jewish Tribune, 26th February '07
Nearly everyone with whom I had contact: friends, family, professionals or others mocked my voice and seemed to think such behaviour was entirely reasonable. I felt stripped of my identity, excluded, isolated and disadvantaged by a voice need and then labelled by vague terms difficult or hard to reach. It suggested all disabling conditions are the same and can all be managed in the same way.
In today’s world everything is done by phone a problem when my voice disappears or is too loud. When I found my voicemails used as office entertainment, I stopped leaving messages. Organisations object to anyone giving my instructions by phone and when they do agree, I can only hear my speaker.
My speakers are invariably accorded advocacy rights regardless of whether this affects my financial affairs or resolving the many difficulties of this condition.
Access and accessibility issues to affect people with communications needs are:
  • invisible disabilities,
  • managing our personal data,
  • suitable facilities
  • better use of information technology
  • long-term solutions rather than a quick fix
  • proving disability and extent of that disability to make adjustments
I “felt like a stranger in a strange land" facing an obstacle course of supposedly accessible systems which felt like an obstacle course including:
  • My landlord, a social housing association fails to make reasonable adjustments in its service delivery which includes ignoring all of my correspondence
  • This housing association, on Learning that I was a deceased tenant’s executor, then also failed to deal with me in a civil and dignified manner
  •  While sitting on a Council’s access and accessibility forum for local services, its staff initially refused to pay c. £150 for voice software to help me contribute.
  •  Preparations for all complaints procedures including Ombudsman services take longer to prepare than the norm, yet no allowance is made for the needs of this

Where and how to unravel this alien world to create a semblance of normality?

How coach has helped

Disability and data protection legislation promises the world but delivers little with systems setup to fail while granting fewer, different rights and require the strict need to prove disability on a case by case basis.
Crucially, an executive coach was the trigger to a semblance of normality and helped me accept that I can only change my attitude to my new world order. With creative and lateral thinking we designed an effective email coaching method and a strategic plan as well as identifing and reinforcing empowering beliefs and finally, we undertook extensive work to reinforce my beliefs of:
  • only being able to change, control and manage myself
  • the behaviour of others being outside my control.
  • Devised strategies to improve self-management and boundary relations.
  • Classified people and situations for more effective communications
  • Analysis of benefits and losses.
  • Better prioritisation and time management

Accessibility for people with communications needs

Like everyone with communications needs, I am entitled to be heard without being treated as the sum total of my disabilities. People with communications needs also have access needs and different to accessible infra-structures for wheelchair users, deaf or blind people.

My access is affected by my clarity, self-awareness and the ability to convey my aims, objectives and aspirations to others. Who can know my needs better than me?  In order to convey our needs, we need the right tools for the job of writing so we need: pen, paper, keyboard, communication boards or text to speech software. 
We also need a flat work surface – preferably a table and chair, time to write, time for you to read and speak unless we have a hearing problem. Allow 60+ minutes –booking a train ticket can take up to 20 minutes. My favourite communication device is a smartphone because I can text a message quickly, effectively without speaking.
Public speaking is a personal choice which requires a safe environment, trust and confidence without feeling pressure; having a laugh is fine, but not at our expense.  Ways to involve, include and empower in an appropriate, friendly way include:
  • Allow more time to respond and meet real needs
  • Respect us by being genuine, appropriate and watching our facial expression or body language for signs of agreement or dissonance.
  • Reply quickly to written communications and send an acknowledgement if there will be any delays
  • Where someone can act as a speaker, respect the boundaries of their authority and ask our permission before taking actions likely to affect us
  • Increase our involvement at meetings, training courses and consultations by:
  • Allowing pre-course/meeting reading time
  • Taking time to meet and review any issues before the main meeting
  • Give us control of our personal data, when and to whom it is disclosed its use. 
  • Gear up for this disability with staff training to facilitate our effective communications.

In summary

Clarity, maintaining clear boundaries and being treated as an equal regardless of how others perceive themselves in relation to me. It's important to allow more time to communicate which includes: writing, reading and equipment whether a communications board, text to speech software or a desktop computer.

Deliberately slow, exaggerated and pronounced speech implies inability to hear or understand whatever is going on and low intelligence.
Our hearing and sight are often good so we do not lip read, use sign language or read Braille. “Cutting corners” by excluding us from decisions without permission destroys trust and confidence.
Lead by example and find effective ways to include us in our communities. 
This feature was written in response to communuity comments added to an earlier feature: Diversity training: Dealing with delegates who stammer. If you would like to contribute an article on this theme, we would be interested in hearing from you. Email [email protected].

Wendy Stern is the chair of Action for Involvement, a Sheffield-based think tank which aims to help promote better understand the issues affecting the Public Private Partnership Initiative (PPFI) using models such as value for money and related initiatives to increase community involvement to improve the quality of life of those affected by disabilities. Professional interests include NLP, making mistakes, having fun, love and trust in the workplace and online writing. Wendy blogs

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