A few days ago there was a column in The New York Times where a man debated the ethics of asking his brother to move out. His brother has schizophrenia and can’t live alone. A move to assisted living would give him a lower quality of life. His wife, however, was adamant that the life she wanted to live during their retirement did not involve sharing their home.
I keep finding myself thinking about two lines from Kwame Anthony Appiah's response:
"We can debate how much to hold your brother responsible for his attitudes and behavior, but she can avoid taking offense only by treating him as a patient and not as a person."
"Let me remind you too that the responsibilities you have to him are shared with other family members. If they won’t do their part, you’re not obliged to take up their moral slack."
Who’s responsibility is it to take care of an adult with schizophrenia?
Who gets to make this decision? Clearly, it’s not up to the person who needs care. The decision was made for him before. It’s about to be made for him again.
Today I participated in a conference on Labour Force Strategy in the Care Economy. Part of the discussion addressed how much power the Canadian Government has over who performs care work and the conditions they work under.
The federal and provincial governments develop and carry out programs bringing people into the country to serve as migrant care workers. They make this program and thus have power to set requirements around working conditions.
Even with programs to recruit foreigners to provide care in hospitals, residential care facilities, and private homes, there is a massive labor shortage. The working conditions are so brutal and the pay is so low that people will not take these jobs.
The government has just as much power to determine the conditions of family care workers.
Family and friends are compelled to provide nursing care, administrative work, and housekeeping because there is no way for people who need care to access professional services.
Many people identify as a caregiver for the first time when they leave their job in order to become a full-time caregiver. They are “just a…” wife, brother, neighbor, dad, friend until the labor required crosses a certain threshold. Until it becomes unreasonable and interferes with their ability to be anything but a caregiver.
Quebec has significantly more mothers of young children in the workforce because of access to affordable, reliable childcare. Providing access to care gives people the freedom to choose how they would like to invest their time. Some people are opposed to publicly provided childcare explicitly because they believe mothers belong at home.
If there was affordable, reliable care for all people who need care, their family and friends would not be compelled to leave the workforce to provide this labor without pay.
There is no perfect life. There is no perfect world. We have to choose which set of problems we’d like to have.
Some countries — including Canada, the US, and Switzerland — have chosen to have disability, illness, and dependence be a private responsibility. If you have a young child, a disabled loved one, or an elderly parent, that’s your problem. You may have to choose between risking neglect charges or falling deep into poverty. People who need care are dependents.
Other countries — like Australia, Sweden, and the Netherlands — have decided that there is a minimum standard for everyone. Everyone deserves certain things and that includes access to care. If your loved one requires care, they have the right to that care, regardless of whether or not you want to personally provide it. People who need care are people in their own right.
No country has a perfect solution for the provision of long-term care. There isn’t a place in the world free of exploitation, abuse, and inequality. Still, the experience of living with or loving someone with a disability is very different from one country to another.
There are legal protections for professional care workers, family care workers, and people with care needs. Laws on paper don’t automatically turn into societal changes. We have to enact those laws, redesign systems, and shift norms.
Working family caregivers are protected by the Ontario Human Rights Code. It’s illegal to not hire someone because they’re a family caregiver. It’s illegal to fire someone because of their status as a family caregiver.
What family caregiver has the time and resources to file an application with the Human Rights Tribunal? They offer free legal resources, but the onus is on the person being discriminated against to fight for their rights. Those rights can hardly be described as guaranteed.
It is legal to fire someone if their caregiving responsibilities prevent them from doing their job.
Why might a family caregiver not be able to do their job? There’s the 20-something-cliff for children with disabilities. There are patients being discharged from the hospital needing 24/7 nursing care. There are people who need ADL support throughout the day. There are people who need 24/7 supervision for decades. There are residential care facilities so underfunded and short-staffed that sending someone to one feels like condemning them to death.
Family caregivers are forced to quit their jobs. That is a choice made by the government.
When the government decides long-term care is a private problem, they create the conditions for exploitation, abuse, and inequality for workers, people who need care, and their families. Even when there isn’t a government agent in your home, the government sets the stage.