Can we hope for a new dawn of thinking around cognitive impairment? I nd that it becomes more and more dif cult to engage with “mainstream” thinking around people living with cognitive impairment. And yes, I insist on not using the word dementia. I know so many people who are living with cognitive impairment who are certainly NOT demented. Why do we want to use this label when its semantics clearly implies something that is so devastating? The word “demens” stems from the Latin root meaning “out of one’s mind”. My Mother is NOT “out of her mind”. In fact, I find her to be very much IN her mind. She is completely aware of her memory problems. She is acutely aware of not wanting to make a fool of herself. She is incredibly mindful in her efforts to try and be present, to follow conversations, and to try her utmost to function optimally. She is definitely not “out of her mind”. I started this series of blog posts with the saying that “If you have met one person living with dementia, you have met ONE person living with dementia”.
While we desperately try and label and categorise people living with cognitive impairment in order for us to make sense of their world, they are desperately trying to avoid our stigmatization. While they try to maintain individuality and significance, we tar them all with the same brush of “dementedness”, listing a host of so-called “symptoms” that inevitably demean and devalue their unique personalities. The more we “put” people living with cognitive impairment in institutions, the less we will learn to live with them. The more we ostracize people, the less our children will learn from them. It is not humane, nor does it serve our humanity to remove people living with different cognitive abilities from society. It does not serve our humanity when we are no longer confronted with difference when we are no longer challenged in our communication, when we simply all live happily ever after. It is in our differences that we find our connectedness, not in our sameness. The more we create echo chambers, the less tolerant we will become, the less kind and the less forgiving. The more we see the Trumps and Borises of the world poke fun at “the other”, the more we exacerbate racism and other-ism.
The same goes for older people who live with cognitive impairment – we have unlearned our ability to be with them in an inclusive society. We simply cannot tolerate the fact that they might be slower, that they might not comprehend or that they might need extra attention. It does not suit our lifestyles. So we “put” them in places where they need “professional help”, creating ghettos for which we tap ourselves on the shoulders thinking that we have done the right and the moral thing. Let’s go into this decade fighting ageism and ableism. Let’s speak out, take stock of our own prejudices, become introspective, stand still and ask ourselves “How would I wish to be if I should become cognitively impaired?” Would I want to be in a room in a facility with only people who are also like me? Not ever see children, or pets, prepare my own cup of tea, plant seedlings, fry an egg or simply sleep late? Would I want to be tied to a chair? Would I want to be fed liquidised lasagne? Maybe through a tube in my nose? It is time to rethink the future of ageing.
It is time to change our discourse, to rethink what we envisage for ourselves. We have done the damage to this generation. We are next. How would YOU wish to be? And if this is not how you envisage ending your days, then start speaking out. Make a noise. Become an activist for your own future ageing. We are all on our way there….