Recently, a friend and colleague railed at our collective lack of empathy for homeless people living on the street. “What kind of a society do we live in where we step over another human being lying on the sidewalk?” she demanded. I visualised myself on the street, seeing a human shape huddled under a blanket in a doorway. Then, I see myself turning away and hurrying by, afraid to speak.
“What stops me from making eye contact or from speaking to a homeless person?” I wondered as I shifted in my chair. “Alright”, I thought, “If I did stop and say hello, what exactly would I say? Excuse me, Sir… or…. May I help you? (do they look as if they need ‘help’?) or…. Would you like something to eat? (I don’t want to accompany this person to a restaurant, I’m on my way to an appointment!) Oh, forget it. I don’t know what to say.” So, in my mind, I keep walking.
I’ve been thinking a lot about the language of giving and receiving care. It’s so difficult – have we forgotten it? Did we ever have it, or do we need to invent a new language of expressing need and gratitude?
I’ve begun to think about the purpose of our language in caregiving. So much talk is given to helping our loved ones be more ‘independent’. But is that what they (or we) really want? One thing I know is that independence is not what it’s cracked up to be. Independence is a cruel fiction for many of our loved ones and even for those who are more able, it’s just an idea that equates to loneliness. ‘Interdependence’ is a much better guide post for our actions and policies to support both caregivers and their charges, but that word hasn’t caught on as many of us had hoped.
I think it’s dignity that must drive our search for the language of care and most often, dignity can be equated to contribution. Everyone wants to feel useful and to have the opportunity for being empowered to act, even if their physical or mental capacities are very diminished. So perhaps, it’s ‘enabled autonomy’ that we strive for in our caring relationships. Let it be so for the purpose of this line of thinking.
If we want to help someone be autonomous (even if they need assistance to get through much of the day), what are some ways of offering help? Perhaps the first way is to be silent and observe closely. Is your loved one struggling to do something? Is that the moment to ask, “Want some help with that?” Next time that task comes up, does it seem appropriate to mention, “I saw in a magazine recently these really nice sweaters with zippers instead of buttons. I’ll pick one up for you to try, but in the meantime, I could help with these buttons – they are so annoyingly tiny!”
Facilitating people to be autonomous with dignity is time consuming work of the human heart. Caregivers know perfectly well that it’s much quicker and easier to just do the task for the person while prattling on about a different topic in order to distract ‘the patient’. And there may be times when that is necessary, but can’t we be honest about it? Our loved ones deserve the dignity of an honest exchange during their care activities.
Offering assistance when it’s unwelcome can be tricky. Sometimes, “I’m here if you’d like a hand with that” can result in watching in painful silence while a loved one tries and fails to manage eating a bowl of soup from a spoon held in a trembling hand. If inserting dignity into the situation, rather than dealing with the mess (or eating the soup) is the objective, perhaps it’s not so hard. Make the soup texture the common enemy – “look at how they make the soup so runny these days! It’s probably a cost cutting measure. Let’s see what’s in the fridge – maybe we can use that soup as a base for stew. Mashed potatoes here we come!” Because dignity is the objective and enabled autonomy is the means to the end, the words come out in ways that are conspiratorial, empathetic, light-hearted and conversational.
But, what of asking for help? Should we expect our charge to be aware of preserving dignity in herself as well as her caregiver? I believe we should. Take the case of our son. He has very severe cerebral palsy, but that hasn’t stopped him exercising terrible manners over the years. A disability is no excuse for rude or self-centred behavior in our house. So, when I walk into his room in the morning and it’s Mother’s Day, for example, I might hear a demand to change the channel on television. I want to correct, but not demean, so Nick will laugh as he tells people that my response will be “Nick, I’m going to walk out of your room and walk in again. We’re going to say good morning properly next time so repeat after me, ‘Good morning, Mom! You look especially fantastic today!’ (I jazz up the compliments so we can both laugh, but he gets the point of the exercise.) And for those who aren’t aware, Nicholas is non-speaking. But his language comprehension is near-perfect and if he manages to blow me a kiss the second time around entering his room, I take that as a respectful morning greeting.
I still don’t know how to begin a conversation with a homeless person I’ve never met. I don’t know how I would end that conversation, if I ever did manage to begin. The language of care is very tricky and fraught with emotion. But one thing that my gut tells is right: we must begin with love and dignity. Perhaps the words will follow.