In 2015, Dr Al Power, Daniella Greenwood and I were accused by a young academic of being deeply offensive, and wrong. This was after we had all given keynote presentations at a conference challenging the status quo in dementia care, and in particualr challenging the concept of BPSD. We believed then, and I’m confident I can speak for them on this here, we all believe even more so now, that care practices need to change and we need to #BanBPSD.
Late last year, long before the COVID travel restrictions, I gave a presentation at a workshop hosted by the Special Interest Group on the Behavioural and Psyhcological Symptoms of Dementia.
I was the ONLY person with dementia there,and when I commented on it, I was told others could have registered.
The problem with this, is I had to self fund to attend Iit was held in Sydney, I live in Adelaide). Most others with dementia are not prepared, or are unable to self fund their inclusion; I have been around long enough to know that in many cases, if I [we] don’t, then we don’t have a voice, and our inclusion is not equal to others.
Anyway, I spoke for the allotted 3 minutes about why I believe we need to Ban BPSD (yes, 3 minutes, so it cost me approximately $229 per minute, plus taxis).
And I’m not employed, like every other person in the room was.
Once again, although perhaps more gently than at other times, I was admonished by one of the academics in the morning tea break (from my perspective, it felt like I was under attack).
In fact, it is important to fess up how hard it was to cope with, as I ended up in the Wash Room sobbing in the break.
I’m reasonably sure if I was an ‘academic’ working in another university, I would not have been attacked, but a professional conversation would have ensued.
Even though I consider this person a friend, and respect her greatly, the tone she first spoke to me in was angry, and defensive. Even later in the day, it continued. I did not intend to upset or offend, and had merely copied a list from an Australian government website (obviously, with reference to it). Some days, I still want to scream… but more often in situations like this, I end in tears, as my emotions are more labile these days.
As most who have folowed my blog for a while will know, I often talk about the harm of labeling walking as wandering.Wandering was seconnd on my list that day, as a harmful label, but only near the top, as that is how it was listed on the government website.
In a post which I thought I had read on Medium, Dr Shibley Rahman says: “Somebody which the healthcare staff can take delight in calling ‘wandering’ on the ward may indeed, in all fairness, be distressed and extremely bored for being in an unfamiliar environment. He is likely to have his distress exacerbated if he has a “1–1” following him everywhere, as if he has committed a serious crime. If he has further been deemed to lack capacity, a ‘deprivation of liberty’ notice can be slapped on him. But someone once said that human rights are inalienable and universal?”
It’s important to be kind even when we disagree with someone. If only everyone lived by that motto.
Two things I find perhaps the most disturbing of all things in the world of activism and advocacy, is 1) how often people without dementia think it’s ok to attack or bully peope with dementia, and 2) why inclusion is often denied if we cannot self fund.
They continue to make me more than…