I was in an assisted living community, about to facilitate a workshop for the people who worked there. It was a “memory care” community, a place that specifically cares for people with Alzheimer’s or other types of dementia. I was milling around, chatting with people. This lady, who lived there, was watching me from across the room. She wheeled herself to me, almost furtively. She grabbed my hands in hers and looked right at me. She had huge, beautiful brown eyes.
She said, “Were you a dancer?”
I was a surprised by the question, because I was. I had danced ballet until I was 15. And I had seriously considered pursuing it professionally.
“Yes”, I replied. “But I stopped.”
She nodded seriously, in an understanding way. “Why did you stop? Were you afraid you would not make it?”
I answered, “Maybe……”
She looked deep into my eyes. “Don’t worry. I can see in those eyes that you are going to go far.”
This was a woman who was living with what we might call “moderate to severe dementia”.
She saw me. And I saw her. She was beautiful and kind, and her words made me tear up. I was seeing her, for who she was at that moment. But did other people see her?
I think about this a lot. That we not only ignore aging in our society, but we really don’t “see” people for who they are as they grow older and grow with dementia. We see lots of things about a person – their wrinkles, their wheelchair, their walker, their diagnosis. But we don’t SEE them.
People tell me that they feel invisible as they grow older. I hear this theme in the many conversations I have with elders living in nursing homes and assisted living communities. They tell me this in different ways. Sometimes, they tell me by making it clear that they do not want to be a “bother”. Other times they tell me by saying they don’t matter – that there are other people who have needs too. I see their invisibility when people pass them and do not acknowledge them. When they are treated as if they are not there.
This invisibility extends outside the walls of nursing homes and assisted living communities. I see it in doctor’s offices, at the grocery store, and in my own neighborhood. This invisibility is even in research, when we group people into categories such as “frail” or “active”. When we generalize millions of people growing older and growing with dementia by putting people into neat little boxes.
People living with dementia tell me they feel particularly invisible. Maybe their friends and families don’t talk to them as much, or maybe not at all. Maybe people see them for just their “losses”, or maybe they create an image of who they think a person with dementia should be.
Yet, each person is a unique human being. Time, cognitive changes, and change of living arrangements do not diminish who a person is.
Invisibility is the opposite of visibility, of being seen.
A basic human need is to be seen. But what does this mean? Do people actually feel like they are being seen, especially as they grow older? Why or why not? When do they feel seen?
I think that all people deserve to be seen. To tell or show us who they are. For us to be ready and willing to take this gift.
We need to see each other for who we are as we grow older and grow with dementia – who we have been, who we are now, and who we will be. We need to be curious about each other as we grow older.
I believe we have to change the way we see aging, and that starts with seeing individuals who are growing older. I believe that the more we see older people for being people, we will do better at how we treat older people, and maybe even change the way we support each other through services and care. Maybe we will find better ways of actualizing what matters to people as they grow older and grow with dementia, and how they want to live. When people are seen, when we see people, we feel more connected to each other.
So, I have started a little passion project.
Being Seen is a project about providing a place for people to be seen as they are growing older. Being Seen is about not seeing people for their age, but for who they are at their age. Here is what I know about Being Seen thus far.
Being Seen is not about presenting portrayals of growing older that are positive or negative, successful or not successful, frail or active. It is just people being who they are. I mean, who am I to label their experience?
Being Seen is not about interpreting people’s experiences through our lens. It is about giving people the mic to tell us who they are.
Being Seen is not just who a person was – their life story. It is also who they are today.
Being Seen is about changing the narrative of aging by creating a new narrative, one that is made from elders themselves. Being Seen is about honoring who people are, as individuals, as they grow older. Each person is unique and has their own story. The story we have created about aging has not been built from the ground up. Let’s “go back to the root” and see people for who they are.
Being Seen shares vignettes of people who are growing older and growing with dementia. The definition of vignette is “a brief evocative description, account, or episode”. In the context of photography, a vignette is often regarded as the darker corners around a photograph. The things that we do not look at. But they are there.
These vignettes might be quotations, photographs, or more lengthy interviews. Elders in these vignettes will be from multiple types of communities, from “typical” residential neighborhoods, senior apartments, as well as elders living in nursing homes and assisted living communities.
Here is what I do not know about Being Seen – what I am processing and gathering ideas about.
How can I create a place for people to be seen? Is Being Seen a website? A social media site? A blog? A book? A film?
Being Seen is about seeing people for who they are as they grow older and grow with dementia. So, does it target specific age categories, like 55+? Technically, we are all growing older, and people living with dementia vary in age.
What do I ask people to get to the nugget of being seen? What questions help us to see people? Are there specific questions? What does it mean to be seen or not be seen?
So, I need help. I would like you to be a part of this conversation about what it means to be seen. And, to contribute to the story of who we are as we grow older. Here is what I am asking of you.
Consider answering these questions.
What does it mean to be seen?
At your age of [fill in your age], what would you like people to see about you?
At your age of [fill in your age], what makes you feel like you are being seen?
At your age of [fill in your age], who are you now?
You can either share your answers in the comments below or you can email me at firstname.lastname@example.org.
I can’t wait to SEE you.