It’s election day in Toronto, which means what people deserve is being discussed. It’s always interesting to see what people view as worth campaigning for and what doesn’t make the list.
There are thirty people running to be the next person serving as mayor in Toronto. As a friend reminded me the other week as we walked on the Beltline, what politicians say aren’t promises, they’re expressions of their values.
In political campaigns, so many things come down to statements of opinion about what are basics that everyone deserves and what should be a reward. What should we only get if we’ve earned it? What should be given only to those who prove themselves worthy?
That was on my mind as I was reading Waste and Want: A social history of trash by Susan Strasser. I’d gone for her history of housework and, when the library didn’t have that, was intrigued by her other titles.
“Women played many parts in World War II, and they were all time-consuming. Rosie the Riveter worked fourty-eight hours a week; she took crowded public transportation to and from work; she shopped during her lunch hour, because few stories had evening hours. Many of her sisters committed themselves to workweeks of thirty-two hours and more, without pay. Women volunteers ran the Red Cross office, the local hospital, the day care centers. The national bond drives were administered by a Washington staff of forty, with women volunteers at the state and local levels. Unpaid women staffed government agencies, including the Selective Service, the Office of Price Administration, and the U.S. Employment Service. More than three-quarters of the workers in the Seattle OPA office in 1944 were women volunteers. Rationing depended on more than 300,000 volunteer women, many of them ‘price panel assistants’ who checked prices in their neighborhood stores, helping uninformed retailers and reporting those who intentionally broke the law. In California, these volunteers were recruited and organized by women who had long been volunteering for labor unions and for organizations like the League of Women Voters, the Community Chest, and the Red Cross. Even women’s iconic roles as sisters and sweethearts to be protected by American fighting men were translated into volunteer work at the USO, where they staffed recreation centers for servicemen (252).”
I think about the amount of time people, perhaps most often those socialized to be feminine, spend on unpaid care work. This was a reminder that the world relies on unpaid labor in many venues. When so much of our essential infrastructure has been run by unpaid labor, it’s no surprise that people assume it will simply continue that way.
There are many differences between volunteering full-time at a hospital and serving as a full-time caregiver without pay.
One of them is that we celebrate volunteering outside of the home. We punish unpaid labor inside of the home. The celebration isn’t particularly quantifiable: your picture in the paper, an award at a fundraising dinner, your neighbors looking up to you. The punishment is easier to quantify.
This punishment is most extreme in the US. Andrea Louise Campbell outlines it clearly in Trapped in America’s Safety Net: One family’s struggle. We are required, both socially and legally to various extents, to provide whatever care our family members need. We are also required to be independent, to be able to provide for ourselves and our own. Given the cost of living and of medical care, many family caregivers who provide unpaid essential care find themselves dependent on the state.
There is mandatory poverty and mandatory shame. In the US, there is no right to caregiving support outside of whatever family members are required to provide. There’s no right to medical care, food, or housing. The US no longer has the poor house, we have the Medicaid spend down.
Every family caregiver has been declared a saint at one time or another. Like those joining a religious order, to take the mantle of family caregiver is to take a vow of poverty mandated by the government. In order to keep insurance coverage, in order to get visits from personal care assistants, in order to get assistance with basic necessities, they have to agree to be bound to income and asset limits.
Each state has its own maze of programs with their own eligibility, enrollment, and requirements to stay the program. In the case of Dave Campbell and Marcella Wagner her 2012 accident restricted them to an income limit of $2,100/month and $3,150 in assets, including tax-sheltered retirement, medical, and education savings accounts for a family of three. Their receipts were scrutinized by government agents.
Over 30% of people in US residential care facilities are impoverished. Our government still makes this poor house for the disabled as unpleasant as possible to discourage people from showing up at its doors. People are turned away and pushed out as often as possible. The stigma is strong enough that people who have made impossible sacrifices for their families confess the overwhelming guilt they feel for not being able to keep them at home longer.
Volunteer full-time and you get a little award to display or tuck in a drawer. Someone shakes your hand on a stage and says what a good person you are for helping your community.
Serve as a family caregiver and you’re shamed for being unable to provide for your family, for making irresponsible choices, for being a ‘taker, not a maker.’
We all pay a price for this paradox of our society, the way we punish unpaid work within the home and reward unpaid work outside of it.
That person who feels the intrinsic pull of duty to perform care work is likely to be the person who would have volunteered in another capacity. They would have been building their community, according to their interests and their abilities. Instead, they are pushed into this all-consuming, invisible role of care work. Rather than working as a team to build community, they’re left to do their good deeds alone at home.
The caregiving crisis and the crisis of social isolation are not because so many more people are surviving to old age or able to live with disabilities. They’re choices our politicians have made.
We can make different choices.
Some western nations really have done away with the poor house. As Campbell explains:
“Advanced-economy nations fall into three groups when it comes to public LTC policy. The United States is in the bottom group, with means-tested provision only, along with England. In the middle are mixed systems that provide some services universally, others on a means-tested basis, in a variety of permutations; Scotland, Ireland, France, Austria, Italy, Canada, Australia, and New Zealand fall into this group. At the top are countries that provide universal coverage of both institutional and home-based personal care to all care-dependent individuals. These include countries with social LTC insurance, like Germany and the Netherlands; countries that finance universal LTC through general tax revenues, like Sweden, Norway, and Denmark; and countries that include LTC in their regular health system, like Belgium (116).”
What we deserve, whether family values deserve to be punished, depends on our passports.
Canada may be in that second tier, but it’s still confusing enough that you’ll want to check out the Disability Benefits Wayfinder.
If you’re in Canada and caring for a sibling, check out the free online course Savvy Siblings from the Canadian Centre for Caregiving Excellence.
If you’re in the US and caring for someone diagnosed with cancer, you can get help navigating the system from Triage Cancer’s legal and financial navigation program.
Volunteers get to go home, can choose not to go in today, can actually rest when they are sick, don't get the daily guilt trip when their tired and grumpy, in fact they often get sympathy. Volunteers, volunteer their time and energy. Carers often don't have any choice in the role, it just happens to you, sometimes it morphs over time, but commonly it happens after an emergency event and it's just thrust upon you, to give up your life as you know it, often even commit others like your partner, children and friends to years, even decades of background work and stress. And, there isn't even a job description or training, or recognition for the skills learnt and demonstrated for years, in fact, as a carer you'll find yourself old, exhausted with ptsd and injuries, unemployable with no proof of the years of hard labour. B