“MUMMY, TELL ME the story again of how you made my brother blind” – The innocent words of my then seven-year-old daughter in an attempt to make sense of her brother’s multiple disabilities.
Occasionally I traded her usual bedtime stories for the real-life story about her brother and his special needs. An effort on my behalf to normalise his disabilities.
She did not see her brother as deaf, autistic or partially blind – he was simply her brother. This ‘story’ was generally received with much more joy and excitement than any of her storybooks.
Everlasting silence
Fast forward eleven years and the story continues as I am entering my living room with the daunting task of telling my two daughters that their brother is losing all of his sight. This information was received by what felt like everlasting silence and stunned faces.
No words escaped their lips, what could possibly be said? Soon their brother will be deafblind and nothing will ever be the same again. If only this was a story, one that did not belong to us, but rather belonged to a book on a dusty old shelf.
Deafblindness is a dual sensory impairment involving vision and hearing problems. The degree of visual and hearing loss can vary, depending on each individual. There are many causes of deafblindness such as premature birth, Usher syndrome, CHARGE syndrome or as in our case, Rubella during pregnancy.
Ireland does not recognise deafblindness as a distinct disability. The European Parliament formally adopted a Written Declaration recognising deafblindness as a unique, separate disability in 2004, but fourteen years down the road, Ireland is yet to do so.
17,000 people affected
It is estimated that over 17,000 people are affected by deafblindness in Ireland, with this number increasing due to the ageing population. The fact that this disability is not recognised, means that we are literally feeling around in the dark for the right guidance and appropriate services.
Recognition of deafblindness is crucial as this will result in the development and implementation of Deafblind specific services.
Why not just turn to deaf and blind services for support I hear you ask? It is not that simple. Combining the two services will not suffice for a such a complicated disability, which is further complicated by the fact that around 90% of deafblind individuals also have an additional disability.
Deafblind specific services
Deafblind specific services will allow for more opportunities for the person with the disability while also removing barriers, rather than creating them. Barriers such as isolation, communication, lack of independence and the lack of individual support, which are all made more complex by the dual sensory loss.
The recognition of deafblindness as a distinct disability needs to go hand in hand with raising awareness about the disability. The Anne Sullivan Centre provides residential and outreach services in Ireland for people who are deafblind and they are currently in the process of facilitating awareness training in hospitals and schools until the end of May.
Fear, sadness and uncertainty
We are entering another chapter of our ‘story’ as I am holding my breath in anticipation. We are being catapulted into the next phase of our lives with fear, sadness and uncertainty.
The lack of recognitions has resulted in the lack of deafblind specific services and as a result has failed to provide vital support and services for my son who is facing the biggest challenge of his life.
My hands might be tied to a certain extent, but I can still play my part in raising awareness around deafblindness as our so-called ‘story’ continues into a very uncertain future.
Hesline Crawford is a mother, carer and advocate.
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