Yesterday was Veteran's Day in the USA, and coincidentally, I had just finished reading Me Before You., a book about disability. The story doesn't relabel disability as differently-abled. Will Traynor, before his accident, could do almost anything, but he no longer can.
My daughter-in-law tossed the book at me, had knocked it off in a day. But it seemed sophomoric, at first, took me awhile to get into. But when someone else really likes something, you try a little harder. The word in Hollywood is that Emilia Clarke of Game of Thrones will star in a coming movie as Louisa Clark, no relation, and Sam Claflin of Hunger Games is a likely Will Traynor. So we'll keep the spoilers to a bare minimum.
Chick lit, sure, but much to take away.
When we meet him he is paralyzed and totally helpless. He has a full-time nurse to change his colostomy bag, administer meds, bathe, dress, and get him in and out of bed. The patient is angry, sarcastic, hopeless and tortured. Life is physically and psychologically painful always. But Will has money. So we think: he has options, control over his future. There is a piece of us, those of us who are not in that one percent of the privileged wealthy, that assumes money is the answer to everything.
The mission, set out by Will's mother, not Will, who knows better: Motivate him. Help the boss find enjoyment, something good about living, a reason to ultimately choose to live it out, rather than end it somehow, some way.
Because disability is much more that ____ happens. (Those of you who disagree or have different thoughts, please share in the comments below.)
Not so for those struggling with severe disabilities, the differently-abled, forced to hand over, surrender free will. There's no time for it. The work, the time, the energy, is in pain reduction, ambulation, feeding, eliminating, getting through the day in the most utilitarian fashion, getting the simplest things done. As the potential Great Eraser of Autonomy, severe, totally debilitating trauma, accidents, foster reliance upon others, dependency. And independence, its opposite, is how we define adulthood.
So enabling any choice, even little choices, is showering presents upon someone who is debilitated, who has the luxury of only too few.
(2) Gift Two: Drop all assumptions.
Like any of us in relationships, a caregiver is likely to project her own needs and wants in any given situation with her charge. It feels like empathy, but isn't. There is no real knowing what another person is thinking or feeling, not without asking. And yet our default is to behave as if. This will make a grumpy person even grumpier, because usually we're wrong. Best to ask.
To lose those personal projections, keep in mind that the protected classes: race, color, religion, ethnicity, age, military status, gender, and yes, disability are legally protected because people treat people who are different, differently. They make to many assumptions.
(3) Gift Three: Teach less, learn more
Caregivers, like any service professionals with some training, teach. There are right ways, wrong ways of doing almost any little thing, so imparting the shoulds is a necessary evil, a part of the job. But to teach there must be a student, a willing audience, which means a hierarchy, one has more status than another. More important than relaying the shoulds, the empirical data, or knowledge, is hearing the pain, the frustration, actively listening and validating. There will be time to teach.
Our emotional disabilities, the things that hold us back, are worth sharing. The details aren't necessary right away, we're entitled to our psychological privacy. But shame about negative events is self-destructive, implies a fear of exposure, anxiety, something missing socially. The way back is sharing some of it. Sharing with someone who has a physical disability works both ways, helps the one who shares, and the one who listens.
Why? When someone shares with us the process elevates our status. We merit the share, feel important. This is the intimacy, the glue of relationships. She shared. I must be good, trustworthy-- worthy of a good tell.
(6) Gift Six: Respect resistance.
Helpers usually encounter resistance. When a routine is rejected, when someone who needs help pushes us away, best to wait, as long as possible. This means enduring long silences, and when they are long enough, asking for suggestions. Resistance is usually about powerlessness, lacking control, and we have to pay homage to it, because accepting that can take a long, long time.
That said, some people like it that there is someone in bossy control of a situation.