The following is from a letter that I wrote to support the work of a Professor at the University of Bath (UK) who is also an inventor and a Dad of a six year old lad who is disabled with cerebral palsy.
I met Dr. Tim Adlam at the International Festival of Conferences on Caregiving, Disability, Ageing and Technology (FICCDAT) where I was the festival keynote speaker on October 6, 2011, in Toronto, Canada. Tim told me about a concept that he wanted to pursue involving a tactile, multi-sensory object that could be used for two people to ‘communicate’ without the use of words. When touched, banged or stroked, the object would give sound, light or other sensory feedback that could be experienced by the second person simultaneously. Taking turns, each person could experience the effects of the other’s handling of the object. In this way, a kind of conversation could take place involving even non-verbal people, including those with cognitive disabilities or dementia.
Much has been studied about the lack of personhood assigned to people with severe disabilities, especially those residing in institutional settings. A device that would facilitate a shared experience of simultaneous exploration and discovery could, potentially, change carers’ attitudes toward their charges, possibly leading to more positive outcomes in staff/client relationships.
In this morning's Telegraph, I happened to see an article about a "profoundly" brain-damaged woman, who relations say should be allowed to die, but who sometimes displays "a bit of a smile" when being gently teased about men, a carer told a High Court judge yesterday. The lawyer representing the relations said the woman's family feels that she would not want to live a life "dependant on others".
This is not the first case of its kind, where family members are pitted against each other or against the state in a fight to continue sustaining the life of someone very dependent vs "letting nature take its course" by removing hydration and sustenance. Often, as in this case, someone has brought the case who is so averse to witnessing dependency that they equate it with a loss of dignity so great that they no longer see personhood in their beloved relative. In my book "The Four Walls of My Freedom", I rely heavily on the work of Eva Kittay to pick apart issues relating to dependency and how an aspiration to the idea of independence harms many people with disabilities as well as those ageing with dementia.
If a woman smiles when being teased about men, is this enough to claim personhood and a life worth saving? I think it is. Our challenge is to explore how to spin this exchange between a highly dependent woman and her carer into a deeper conversation. For this, we look to inventors such at Tim Adlam. And of course, Eva Kittay who will guide us in our thinking about what it is to be human.