I’ve been trying to get myself to like reading scifi. It’s never been my thing. I’m not big on non-fiction in general. Scifi books keep coming up as transformative works that break us out of the limits of our world. Their authors help us escape the assumptions we’ve made about the way the world works and see what’s possible.
Ryan Lythall’s story in the Ottawa Citizen isn’t scifi. It might feel just as transformative, though. [I’m pretty sure it showed up in my feed thanks to Donna Thomson.]
He spent years in institutions, shut off from the world. Then they got funding for 24-hour home care. Adequate care now means that Ryan and his mom have fulfilling lives of their own choosing.
The article hints at just how much the world is depriving us of with our current system of care work. Even in this success story, there’s plenty of room for improvement.
Still, when your child is trapped in a hospital for years and everyone tells you it’s the only way to keep them alive, him being able to live in his own place, have a job, and go out drinking with friends can seem like a fantasy.
And of course, because there is a wall of people telling you it’s impossible. There’s no money. There’s too much liability. It’s just not done.
So often the conversation around care work focuses on finances. It's so easy to quantify money spent, hypothetical earnings lost while providing unpaid care, and hypothetical costs saved by insurance companies and the government. The numbers are big and impressive.
The easily quantified things are so much less important than the lives lost. It is heartbreaking to think of the years Ryan Lythall spent in institutional settings. The article makes it clear that he's capable of living a full life. A capability he was denied for so long, a capability so many are entirely denied.
It’s a capability his mother was denied, too. Imagine what Irene Lythall could have been doing instead of spending so many years fighting to get her son the basic care he, and everyone on this planet, should be entitled to.
What a modest dream to be impossible: to have a life outside of the hospital. To feel the sun on your face. To go out with friends. To have a job. To date.
Sure, some things about disability are inherently a hassle. We are all subject to hassles in life, to burdens and pains. Our government does not need to add to those struggles. Right now it does. There can be individual solutions and adaptations without disability being an individual problem.
The things keeping Ryan Lythall in the hospital weren’t inherent to his disability. They were logistical hurdles that the government could choose to create or remove.
The things that are currently impossible are such modest expectations:
Incorporate universal design into the building code
Return to a world where the doctor visiting the patient at home is the default
Use the lessons of ridesharing apps to make paratrans a usable service
Incorporate accessibility information into Yelp, Google Maps, etc to reflect a range of accessibility needs
Streamline eligibility criteria and enrollment for essential services and unhook them from personal and household income
Provide paid care workers with training, psychological support, worker protections, adequate pay, and benefits in order to attract and keep workers
Ensure that people with care needs have a say over who provides them with ADL support
Subsidize care work, regardless of where it’s performed and who it’s performed by, to ensure that people can access the care they need
Provide social security credits for time spent as an unpaid family care worker
Provide universal health insurance coverage and expand it to include dental, vision, and prescriptions
These things do not need to be impossible. What is the purpose of government if not to work collectively to meet the needs of our community? What need is more universal than our need for care?
I've been in Portugal for twenty two days. In that time I have:
met a woman who coordinated home care for the elderly.
met a woman who writes about eldercare.
met a woman who’s temporarily staying in Lisbon because she can’t access the care she needs in the area of Portugal where she lives.
ended up in the bedroom of an elderly Portuguese woman and talked with her family about the struggles of managing paid care.
had multiple people bring up the demographic trouble of a country whose young people are moving to the cities — or elsewhere in the EU or to other continents — in search of work.
heard individual tales of how expats who've retired to Portugal manage their chronic conditions, rebuild their support network, and try to plan for the eventualities of frailty.
None of this was planned. As much as I like setting up coffee chats with “subject matter experts,” I know it isn't necessary. I can just say hello to the people I pass in the stairwell, accept the offer of a ride, join my neighbors as they have coffee at the kiosk in the park, and see where things lead.
Care work is everywhere.
As much as people are eager to tell me that the Portuguese are all about family, not so subtly implying that the caregiving crisis doesn’t exist here, the struggles seem the same as in the US and Canada, just a little different.
Home care is more heavily subsidized, which doesn't mean it's easily affordable. It's easier to qualify for, while the shortage of care workers limits access and quality.
Portugal is roughly the size of Indiana, Maine, or Vancouver Island. Europe has a dense network of trains, buses, and flights. Long distance caregiving by family in the country is less long distance (and more affordable) than in Canada and much of the US. People are more likely to be able to get time off.
Like in Canada, the financial burden of disability is reduced by access to universal health care. Still, not all medical costs are covered and there is a confusing patchwork of programs to try to fill the gaps. There are plenty of non-medical costs to deal with and no compensation for care work provided by family and friends.
The Ottawa Citizen article is a reminder of what we're fighting for. As imperfect a solution as it is, it's a real solution. We are fighting for people to live full lives of their own choosing. And we're going to keep fighting to make sure care work is done in a way that truly respects everyone involved.
Fighting isn't really the right word. We shouldn't need to fight. Can one fight for dignity? Can one demand respect? Can war be the path to peace? I'm not sure what the word for this struggle is. No matter what we call it, it sure is a lot of work.
And it’s a lot of bullshit, in the terminology of David Graeber. Stealing the summary from Wikipedia:
"The author contends that more than half of societal work is pointless, both large parts of some jobs and, as he describes, five types of entirely pointless jobs:
flunkies, who serve to make their superiors feel important, e.g., receptionists, administrative assistants, door attendants, store greeters, makers of websites whose sites neglect ease of use and speed for looks;
goons, who act to harm or deceive others on behalf of their employer, e.g., lobbyists, corporate lawyers, telemarketers, public relations specialists, community managers;
duct tapers, who temporarily fix problems that could be fixed permanently, e.g., programmers repairing bloated code, airline desk staff who calm passengers whose bags do not arrive;
box tickers, who create the appearance that something useful is being done when it is not, e.g., survey administrators, in-house magazine journalists, corporate compliance officers, quality service managers;
taskmasters, who create extra work for those who do not need it, e.g., middle management, leadership professionals."
How much of the burden of care work is summed up in that? It's bullshit that things are approved by government organizations without being accessible. It's bullshit that we need to navigate intentionally complex processes to access essential support. What an absolute waste of our lives to deal with this bullshit.
This caregiving bullshit and disability bullshit is about more than just endless waiting and box checking and playing nice to get what you need. It's about more than appointments rescheduled because of paperwork mix ups or disputing rejected claims.
This bullshit is the sort of stuff that leads people to apply for MAID, medical assistance in dying, because their lives suck. Because they can’t access care. They can’t access housing. They can’t afford the things they need. They can’t access the things that make our lives meaningful.
Access to MAID is incredibly important to me. And so is access to care, with dignity and autonomy. The thought that the lack of access to basic care is driving people to choose MAID is unspeakably awful. And it's not going to change any time soon. Unless it does.
We have to change it. We need to repeal the bullshit.
Reading about the history of care work can be reassuring because these systems — the institutions and policies and traditions — that seem unchangeable are so incredibly new. They date to the 1850s. Or the 1930s. Or the 1980s. Or a few years ago. These seemingly timeless hurdles come and go.
A few days ago a woman I’d just met, who’d fed me an incredible dinner she’d made, realized I didn’t know about the prehistoric tombs that were in the next town over. She glanced at the sky, assessing how long we had until it would get dark, and hurried us into her car.
We stood in the dusk, looking at artificial caves that people created 5,000 years ago. Whose lives were both like ours and unimaginably different.
Nothing in life stays the same. Things can always change. Will always change.
We need to make sure everyone can live a life as full as Ryan Lythall's. And we need to keep going to address the hurdles he still faces.
There's a webinar for men living with paralysis and dating tomorrow. If you’re a woman whose partner has a spinal cord injury, WAGSofSCI is an organization you need to know about.
Thoughtful Hospitalization has a bunch of upcoming workshops for family caregivers of people with dementia.
Texas Monthly has a story about a woman who left her job to care for her son that is guaranteed to make you cry.
The BBC recently covered the astronomical number of people who are compelled to quit their paid jobs in order to provide unpaid care work.
Anne Helen Petersen recently discussed the harms of compulsory kinship and how family estrangement is not simply something to be mourned.
A reminder that rest is not a reward. Nor is it optional.
I get so many terrible pitches every day. Some of them are so wildly inappropriate they make me laugh out loud. Yesterday I rejected an article titled "Are you doing enough for 2022?" You're welcome.
I am disgusted that the American answer to health care access is GoFundMe. This one, however, really takes the cake.
Let's end on a delightful note: Senior citizen roulette.
"The thought that the lack of access to basic care is driving people to choose MAID is unspeakably awful. And it's not going to change any time soon. Unless it does." Which caused me to recall this quote I just came upon this week from the Talmud: "Do not be daunted by the enormity of the world's grief. Love mercy now. Walk humbly now. Do justly now. You are not obligated to complete the work, but neither are you free to abandon it."
My Mom recently died from terminal cancer, we almost were considering MAID. I live in Montreal and even with Covid-19 we were shocked how good the system was at the later part of the journey. Not so good at the in-between part.
Interesting topic!