Press Release

Defining Deafblindness show your support

On Wednesday the 7th of February Rona MacKay MSP will lead a Member’s debate at Holyrood on the need for better recognition of deafblindness in Scotland. Unlike other parts of the UK and many European countries Scotland does not currently recognise Deafblindness as a distinct disability.  The World Health Organisation (WHO), alongside other countries, have adopted the Nordic definition of deafblindness which states:

Deafblindness is a combined vision and hearing impairment of such severity that it is hard for the impaired senses to compensate for each other. Thus, deafblindness is a distinct disability.

Deafblind Scotland have worked with the Parliamentary Cross-party Group on Deafness to develop a Declaration defining deafblindness and are calling for the Government to adopt this Nordic definition in Scotland.

Annabelle Ewing MSP, Co-chair of Deafblind Definition Working Group stated “I was pleased to have been able to co-chair the working group on the definition of Deafblindness along with Julie Ferguson. It was evident to me that deafblindness is a distinct condition that requires a distinct approach. I am delighted that there is now a proposed legal definition on the table and I would call on the Scottish Government to now proceed with its adoption.”

Defining Deafblindness is a crucial step toward recognising and diagnosing dual sensory loss at the earliest point making it possible for people to gain new skills such as learning tactile languages before the condition progresses. 

Julie Ferguson who is living with Deafblindness and is a teacher living in Orkney said “This work is very important to me because I’ve experienced how essential it is for deafblind people to receive specific support.  I grew up as a deaf person but I started losing my eyesight in my late teens.  Suddenly I couldn’t use my eyesight to help me manage my deafness and when I was given advice for my sight loss, the advice relied on me being able to hear well.  I felt like I was on my own, trying to learn how to cope, work, and lead a fulfilling life. Adopting this definition in Scotland will reduce isolation and increase life satisfaction for so many of us”.

Rona Mackay, MSP for Strathkelvin and Bearsden said: “I’m delighted to be leading a debate at Holyrood on Wednesday, February 7 on Deafblindness being formally recognised in Scotland as a distinct disability, after putting forward a motion at the Scottish Parliament. It is a crucial step towards identifying, diagnosing and supporting people with dual sensory loss. Under the leadership of CEO Isabella Goldie, the inspirational team at Deafblind Scotland whose state-of-the-art HQ is based at Lenzie in my constituency, are doing so much to make life better for people with dual sensory impairment. I applaud Deafblind Scotland, its members, staff and volunteers, for working to ensure that lived experience plays an integral part in informing policy.

Notes to Editor:

  1. Current researchestimates more than 30,000 people live with the condition in Scotland, and this number is set to rise in line with an aging population[i].
  2. The full Nordic Definition on Deafblindness is available here[ii]
  3. Deafblind Scotland are Scotland’s only national charity and service specialising in deafblindness and are the national authority on the condition[iii]

[i] Kösters, N., McMenemy, A., and Johnson, C., 2022. Prevalence rates for those with dual sensory loss and dementia in Scotland. Datafakts Ltd., Research report.