Her staff can see that somethings wrong, but she won’t talk about it. She needs little support, she can manage her own money, she can shop and cook nutritious meals, she is well liked in the building in which she lives. When staff visits, she’s strict about her privacy. They can come in for tea, but they are not allowed in her kitchen or her bedroom. She had always before enjoyed the staff’s visits, because she got lonely and liked the chance to chat about ordinary, every day things that were going on in her life.
But now, she just wants them to leave right away.
Finally, when she’s too weak to resist, they get her to her doctor’s office. She’s extremely malnourished. The staff find out that she hasn’t eaten a real meal in weeks. She has no food in her home. Nothing.
She is hospitalized for a few days. Her state of health has been seriously compromised. At first she didn’t want to talk about her kitchen, the lack of food, and the reason she hadn’t eaten. But finally she said that she didn’t have any money because she was helping out her friends.
They were nice to her.
She wanted to be nice back.
So when they asked if they could borrow some money, they always seemed to know when she had any, she gave. She gave until she bled. Once when she tried to hold back some money, to get groceries, her best ‘friend’ asked her not to be mean and joked that she could stand to lose some weight anyways. She handed the money over, her friend said she needed it for rent.
As they tried to talk to her about it, she kept saying the same thing.
They are nice to me.
I need to be nice to them too.
I like to help out.
I was taught to be nice to everyone.
They won’t be nice to me if I’m not nice to them.
If they get mad at me I won’t have any friends.
I’m a nice person, I help people out.
Nice isn’t subservience.
Nice isn’t manipulation.
Nice has boundaries.
“No,” doesn’t erase “Nice.”
Staff had never noticed, on their visits, that she was lonely, because at the moment of their visits with her, she wasn’t lonely. They felt good about the visits because she appreciated them. They got into the habit of visiting her, of being on a social call, that they forgot the had a job to do. They never asked why their visits mattered so much when she needed no assistance from them at all. They never spotted her loneliness and therefore never realized the vulnerability that comes with it.
They knew that she took pride in being nice. They knew that she ‘would give the shirt off her back’ and spoke of her in those terms. They didn’t realize that it’s just a saying, it’s not a way to live one’s life. They didn’t think of the vulnerability that comes with the compulsion to be ‘nice’ to be seen as ‘nice’ and to respond always in a manner consistent with the popular conception of nice.
I’m not staff blaming here. I’m really not. Until the fact that she was starving started to show, there were no real signs for the staff to be concerned about. No one teaches people with disabilities of the true social dangers of the community, true. But no one teaches staff about the fact that people with visible intellectual disabilities have a target on their back and need a different kind of support when living independently in the community. Inclusion has sharp edges, but no one ever spoke to the staff about them and no one taught her how to avoid them.
We have taught people with disabilities …
to be compliant
to be helpful
to be nice.
We have taught people with disabilities to make themselves vulnerable to others. And to themselves.
Nice has boundaries.
“No” doesn’t erase “Nice.”
There’s work to be done here.
Her doctor said, “She could have died.”
Nice and the drive to be nice can be a bullet aimed at the heart.