Thank you, “Roland.”
If you’re a regular reader here, you may remember a few posts back where I wrote about “Roland,” a man with Alzheimer’s I’ve worked with for years who has, in many ways, completely changed the way I look at life and humanity. To jog your memory:
In our sessions now, Roland often sits off by himself quietly, but every once in a while, I get to witness a glimmer of something truly remarkable. You have to watch closely or you might miss it, sometimes it’s gone within seconds. I’ll sing You Are My Sunshine and he’ll smile at me, the same smile he’s always had, and sing along to a verse or two. It is difficult to describe what that feels like. It is a delight so intense and pure that I have never experienced anywhere else. I live for it. Roland’s declining state makes me savor those small moments, knowing that they are fleeting, and just exist simply in that moment with him. I feel grounded in joy, in knowing that are still beautiful moments despite tremendous sadness, in gratitude for every note he sings with me.
Yesterday, I received the unfortunate news that he’d had a stroke and had left the memory care facility to go “elsewhere.” Whether this “elsewhere” is earthside or not, I cannot say for certain. All I know is that, in all likelihood, our paths will never cross again. I hope that wherever Roland is now is peaceful and treating him with dignity, as the last few years of his life have had that in short supply. As I reflect on our years together, I want to take a moment to thank “Roland” for all that he’s given me.
If you glanced at Roland in one of our music sessions, it would be easy to write him off, to assume that the lights are on but no one’s home, as you watched him doze off sitting straight up in his chair or open and close the same empty drawers as he wandered around the room. What I’ve learned is that making an assumption like that not only does Roland a grave disservice, but yourself as well. I thought I needed to chip away at the debris at Roland’s surface, digging miles below the earth to find the diamonds. The more time I spent with him, though, the more I began to discover that the diamonds were just underneath, under a fine layer of dust that could be uncovered with only a gentle breeze. There is one specific moment that, to me, proved that the world within Roland (and perhaps every severe Alzheimer’s patient) was so much more complex than I had ever envisioned.
I have sung the song I Want to Hold Your Hand by The Beatles at least a thousand times at this point in my career, and Roland has probably heard me sing it about a hundred. It’s a regular song in our rotation (as you can imagine, I am so tired of it). One day as I was singing it, Roland walked up to me and stuck his hand out. He smiled, and said, “You said you wanted to hold my hand, well, here it is!” As I returned his smile and took his hand, my mind raced with a thousand possibilities of what this meant, what this really meant.
1. Roland was enjoying the music and listening to it actively, rather than passively.
2. Roland recognized the song and was able to recall the lyrics.
3. Roland was able to process the meaning of the lyrics.
4. Roland was able to remember where in the song these lyrics would appear and come up to me at the right timing.
5. Roland had the ability and desire to make a connection with me, a person whose name he certainly didn’t remember but whose face and presence he may have come to recognize on some level.
6. Roland was able to use HUMOR to make a joke about the lyrics.
It was this last point that really blew me away. There were so many levels of thought and processing involved in getting from point one to point six that I, foolishly, did not expect him to be able to work through. Later in the session, we sang Stand By Me and he walked up again and said “Okay, I’m here. I’m standing by you.” My mind was blown, and I felt like a fool. How could I have been so ignorant? I left the session that day and since then, I have completely changed the way I interact with all people.
There is a term called “the presumption of competence” that I now consider to be one of the major guiding principles in both my personal and professional life. I believe this concept was developed to refer specifically to people with autism, but I find that it applies to everyone- but in this case, I’m using it to talk specifically about people with disabilities of any kind. The definition I’m working off of is: “to assume a person has the capacity to think, learn, and understand—even if you don’t see any tangible evidence that such is the case.” I know I’ve written already about how harmful assumptions can be, but this is often referred to as “the least dangerous assumption” because “in the absence of any evidence one way or the other, which of two assumptions will do less harm to an individual, should it prove to be wrong: the assumption that they are competent or incompetent?” (Definition and quote courtesy of this article).
I’ll give an example of a way that I integrate this principle into my work. We do sessions every week with a group of adults with developmental disabilities, ranging from moderate to somewhat severe. Many people who come in to interact with this group treat them like children- speaking very slowly, putting on a high-pitched voice, keeping conversation only at a very basic level. My approach is quite different. I speak to them the same way I would speak to literally anyone else, the same way I would write this blog post, using the same vocabulary and syntax and humor. This is my baseline; this is where I start. If I initiate a conversation this way and the other person explicitly says they do not understand or they are not able to engage with or respond to my conversation, I will readjust from there and take it down a level (just for the record, I almost never have to do this). Communicating this way preserves the dignity of a person who can comprehend what I’m saying and saves them the embarrassment of being cooed at like a toddler. For a person who cannot comprehend what I’m initially saying, it’s not a big deal because I’ll rephrase until they can understand, and that person will recognize that I view them as an equal and a peer. If I have to be wrong, I would rather overestimate every person’s abilities than do a single person the disservice of underestimating their abilities.
I use this principle when I talk to people with intellectual disabilities and memory/neurocognitive disorders, but I also use it when I talk to children. I’ve found that it makes a world of difference in creating a respectful, egalitarian relationship, which is something I really value Personally, I don’t think you can ever go wrong with assuming the best of people.
To bring things back to Roland: I could go on and on about what I’ve learned from him (as a disclaimer: I do not think disabled people exist “to teach us things” or “to make us better people.” This is one of those tropes that I vehemently disavow. First and foremost, I view Roland as a friend who I will miss tremendously, not as a source of inspiration porn). My years with him have brought me some of the greatest joy I have ever experienced, and some of the deepest, most soul-crushing heartbreak I have ever experienced. Working with him has made me more patient, kinder, gentler. It’s made me more empathetic, more able to see and respond to the world from another person’s perspective, to be willing to take a step into someone else’s reality. It’s also made me stronger in my own disability activism, in knowing that every individual person’s internal world is vast and miraculous regardless of their ability, worthy of fighting for and defending.
Roland, my friend, wherever you are right now, thank you for the years of memories. Thank you for the laughter, the songs, the many tears, and above all, for teaching me how to be a friend worth having. I hope I was able to give you even a fraction of the gifts you have given me.
