There has been an ongoing debate in the dementia community about language, now for many years, and even though there are ‘dementia language guidelines’, I have regularly been told by researchers, universities, service providers and others without dementia, “but we don’t have to use them, they are after all, only guidelines!” Family care partners often seem the most determined group to label us ‘sufferers’, because I believe, they are suffering seeing us live with and die from this ultimately very disabling disease. I have been in these debates regularly, and often start them, and as most people reading my writings by now, know I’d rather be disrespected by the label ‘retarded’ than the label ‘sufferer’; in fact, I personally find that far less offensive than being labelled a ‘sufferer’.
So, I continue my internal discussion about this topic, and have come up with a few internal questions related to people with dementia being labeled by others, consistently and often, as ‘sufferers’ of dementia:
- Should I even continue to resist being labeled a ‘sufferer of dementia’, when some of the time I do suffer?
- Does that particular label though, have too much weight, negativity and baggage?
- Is it a negative label rooted in fear?
- Is it the label given to people with dementia, by people without dementia, because that is how it is for them watching us deteriorate and die?
- Does it strip me of the power I need to deal with dementia in a positive and proactive way?
- Is it short-sighted and ignorant?
- Is it a stumbling block to allowing more people with dementia to become healing resources to the wider community?
- Does the label increase or even cause the stigma and discrimination?
- Is it fair for others to use the label ‘dementia sufferer’ in marketing and media campaigns, simply to raise awareness or money, or is this, in fact, doing us more harm?
- Does it simply suit the current post diagnostic pathway of Prescribed Disengagement®™, therefore supporting the system (but which is not fully supporting us to live with dementia, only to die from it)
- Do people without dementia have the right to label our experience at all?
- Do people with dementia actually have the right to say, being labeled that way, is disrespectful?