My husband Matthew was born profoundly Deaf and communicates by British Sign Language – BSL. Growing up, he experienced fatigue and loss of sensation amongst other problems.
Diagnosis like no other
At the age of 18 Matthew was diagnosed with MS and a year later, became a full time wheelchair user. Being Deaf made accessing information very difficult, and language barriers have always been an issue.
Even at diagnosis, a nurse just wrote down “You have MS” and pushed this in front of his face. However, Matthew was not shocked, upset or afraid as he simply did not understand what it meant. No interpreter was provided and he just thought it was something that would pass in time like the common cold.
That life-changing moment
It wasn’t until a few months later when at home with his mother watching the film The Elephant Man when that life-changing moment would come.
The film was subtitled and the doctor told the elephant man that he could not cure him. Not understanding the word ‘cure’ he asked his mother what this meant.
She explained that it meant you cannot get better, just like he would not get better from MS. This was the defining moment for Matthew and the gravity of his illness finally hit him.
This delay in receiving information became normal throughout his life. He has always said “hearing is today, Deaf is tomorrow” which is a good analogy of the delay in communication he’s faced throughout his life.
Lack of care provision for Deaf BSL Users
Matthew has now lived with advanced MS for nearly 35 years and requires 24 hour care which he receives at home from myself and a team of carers. I am a sign language interpreter so access to information is better for him now, but the biggest issue he now faces is finding appropriate care. Finding carers who are BSL users is extremely difficult.
He has a full time PA who is Deaf and a native BSL user and two other hearing carers who have some knowledge of BSL. But finding appropriate support over the years has proved to be the most problematic part of living with MS.
There are no care homes that can meet his needs and I am currently campaigning to establish a care home for BSL users where staff would have Deaf awareness and signing skills.
If Matthew needed to go into respite, or, if for whatever reason, required a care home full time, there is simply no provision for him. Deaf people with care needs all face the same problem. This huge inequality within the Deaf community must be addressed and change needs to happen so that Deaf people can have their care needs met.
MS and communication
MS continues to have a huge impact on Matthew and his communication as he can no longer move his left arm or hand. For many years, he has only been able to sign with one arm which is extremely frustrating for him. My biggest fear is that he loses the use of his right arm making communication totally impossible.
We have explored various communication methods should this happen but BSL is Matthew’s first language and nothing else is appropriate. He would not be able to operate technology due to his lack of function and poor dexterity in his moving arm.
Despite the difficult life he leads, Matthew remains a very happy person and I have honestly never known him to suffer with depression. Although family life is a constant battle of hospital admissions, infections, hoisting, accessing information in BSL and trying to find appropriate care, Matthew remains very positive. He appreciates living at home in our adapted bungalow with me and our grown up son and going on annual holidays.
He is testament to how we as humans can thrive in the face of adversity and I am extremely proud of him.