What is Deafblindness?
The University of Montreal is developing a global definition of deafblindness that includes the perspective of persons with lived experience. This is an important step in ensuring a connected global community, and a better-informed healthcare workforce. If we have a global definition, care providers could help people recognise the condition and the appropriate resourcing could be funded.
Something I feel that gets missed in the various definitions of deafblindness is that it’s a spectrum. It includes losses of hearing, vision, balance. Some senses are more affected than others. Most likely they will continue to degenerate and move into another part of the spectrum.
There isn’t one ‘correct’ shade of a colour on this wheel. They are all included and sit side by side.
If you think of the colour yellow, there are so many shades, yet we still consider it to be yellow. Bright, pastel, neon, warm. One yellow isn’t ‘more’ yellow than the next. It’s just a different presentation.
These are all just different forms of yellow. We’re all drawn to one in particular, but we have to admit that it isn’t more yellow than the others.
Take me, for example - I am profoundly deaf, I no longer possess a vestibular system, and I have a brain tumour which causes wicked double vision. I am deafblind but I present differently to the next person in my community.
I was in a meeting yesterday with two other deafblind people. I was using speech-to-text apps, lip reading and microphones. Another person was using sign language and large print. The third was using lip reading and inverted-coloured documents on her phone. We were all accessing the information in different ways. None of us were doing it the ‘correct’ way. We were just using another form.
I’m really looking forward to tracking this project and seeing what comes!
Also, If I had to choose a shade of yellow for me, I’d definitely go with sunflower.
My mum used to always call me Sunflower when I was a little kid. It’s always been a happy flower in my mind.
