Behind every disability is a person and that is the message Ashford Paramedic, Adam Line wants colleagues to remember this Deafblind Awareness Week.
Adam’s wife has been registered deafblind since the age of seven due to a rare genetic condition called Alström Syndrome. While she wears bilateral hearing aids that allow her to hear well, her sight has deteriorated significantly over recent years and she now has no useful vision. Despite this, Adam describes her as fiercely independent.
“With some assistance from her guide dog and personal assistants, she is incredibly active,” he said.
While many people recognise her sight impairment because of her guide dog, Adam says her hearing loss is often less obvious.
“Her hearing aids are covered by her hair, so people sometimes miss that she is deaf as well as blind,” he explained. “In noisy environments, her hearing aids pick up and amplify all the surrounding sounds, which can make conversations very difficult.”
One of the biggest challenges, he says, is people’s assumptions.
“Some people often see the disabilities before they see the person and jump to conclusions that the person is unable to look after themselves. While this often comes from a place of wanting to help, it can sometimes reduce that person’s independence.”
Adam says his wife has consistently shown that having a disability does not define what someone can achieve.
“She will put her mind to any challenge and find a way she can do it, just with the little bit of support she needs to access it.”
For members of the public, Adam believes simple communication can make a huge difference.
“People who are deafblind can often struggle if they don’t know what is happening or who they are speaking to,” he said. “When you first meet someone, introduce yourself because they can’t see you to recognise you. Speak clearly and explain what you’re doing so they understand what’s going on around them.”
He also encourages people to ask before offering assistance and to respect the answer they receive.
“If someone appears to be struggling, ask if and how they would like help. If they say no, that’s okay too. They are allowed to be independent.”
Living alongside someone who is deafblind has also changed Adam’s own perspective on communication and accessibility.
“The biggest thing I’ve learned is how much concentration it takes to guide someone safely through busy environments,” he said. “I’m looking for hazards at head height, on the floor and around us. In recent years, I’ve also been pushing a baby pram while guiding someone who can’t see, which definitely requires a lot of focus.”
The experience has also taught him the importance of clear communication.
“I’m constantly reminded not to mumble, to speak up if I want her to hear me and not to leave obstacles on the floor for her to find. She has taught me a lot about supporting people who have sight impairments, hearing impairments or both,” Adam said. “Learning how to guide and assist someone in a way that works for them helps me understand their condition and the best way to support them.”
For healthcare professionals working with deafblind patients, Adam’s advice is to describe actions and surroundings.
“If you’re carrying out treatment, tell them what you’re doing and when you’re doing it. Phrases like ‘over there’ don’t mean anything to someone who can’t see where you’re pointing. Using clear references such as left, right, by the door or by the window is much more meaningful. “Touch can also play an important role so, if possible, allow a deafblind person to feel equipment so they can understand what it is. Touch is a very important part of the sensory experience for people who have lost their sight.”
As Deafblind Awareness Week shines a spotlight on the experiences of people living with combined sight and hearing loss, Adam hopes colleagues will remember one simple message: see the person first and let them tell you how best to help.