Like any other young adult, sometimes Nicholas misbehaves. He swears and if he’s really angry, he will fly into a rage. A flailing arm can give a mother or caregiver a nasty bruise.
This anger doesn’t flare very often; most of the time, Nicholas is calm, happy and polite. But when his mood gets out control, especially if someone is actually trying to help him or offer treatment, that’s when I launch into “strict mother mode”.
“Nicholas”, I say very firmly, “You have an important job in life and right now you are not performing it very well. Your job is to ask for help politely and always say thank you. You have just as much responsibility here as your carers, Mister, so you had better apologize for your angry outburst.”
Now, some people might think that my reaction is unfair. They might believe that because Nicholas is mostly bed-bound and sometimes has difficulty making himself understood because of his very limited speech, that he has a right to show unbridled anger. I disagree. I believe that precisely BECAUSE Nicholas’ physical handicaps require him to receive care, he has an added responsibility to curb his anger and behave in a civil manner.
Care is a two way street and part of building a new paradigm for active citizenship will have to include some training in “receiving” care. What are the ingredients of playing that role well? How can one get the best out of one’s helpers? Is it ever possible to ask too much of one’s helpers? How and when is it appropriate to show anger or frustration?
Age does not preclude anyone from enjoying the benefit of understanding the rules of engagement when it comes to receiving care. Children are taught to respect their parents’ efforts to provide for and nurture everyone in the family. Why should this expectation diminish in the case of disability or ageing?
Perhaps we need to start with ourselves. The next time I am having difficult day and a friend says “Is there anything I can do?” I plan to answer “Yes”, even if I can’t articulate what kind of help I need. The first step is accepting an offer of help. The second step is saying “Thank you!”
Educators have managed to incorporate lessons in ethics and self-esteem in the curriculum. I propose we add some learning objectives to our teaching that relate to giving and receiving care. At lunch one day, children could experiment with feeding each other. In a care home, residents could set aside one hour per week to wash the face and hands of the care home staff, or simply listen to their problems.
If we believe that relationships are the key to a good life throughout life, it ensues that everyone will at some point give and at other points need to receive care. But the language, good manners and ease of transition from one role to another is key to getting good care into the social water supply.