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Your new book, , begins with your own experience of falling in love and becoming a full-time caregiver almost simultaneously. At what point did you realize that what you were going through was not only a private struggle, but also a political one?

For someone who knew a lot about the politics of disability before becoming a caregiver, it took a surprisingly long time to understand my stress and overwhelm as also political. As my mental health declined while caregiving, I joined a support group. There, I was shocked to learn that my feelings were not unique. That’s when a big idea started to germinate: that our culture’s abandonment of disabled people results in the abandonment of caregivers too. I also saw this abandonment as coming from the same place: we devalue caregiving because we devalue the people who need it. I’ve spent many years since stewing on this idea that we have to examine ableism as much as the politics of what we ask love to do in order to understand the U.S. caregiving crisis.

You write that the state uses marriage as a tool to abandon sick and disabled people—that the vow “in sickness and in health” essentially shifts responsibility away from the government and onto individuals. What does that mean in practice?

Millions of people are family caregivers in this country, but we specifically coerce spouses into doing the labor by saying, “You took a vow saying ‘in sickness and in health’ and so this is your job now, your responsibility.” This coercion exists because, basically, disabled people do not have marriage equality. If they receive benefits from the Social Security Administration or Medicaid, they can lose those if they decide to marry due to the spouse’s income and assets disqualifying them. If you become disabled during the course of marriage, spousal impoverishment rules are not strong enough in most states, penalizing disabled people for their spouse’s income so they can’t access Medicaid, which is the only program that provides long-term care at home. Marriage is thus used as a tool for state abandonment, effectively handing over the responsibility of care entirely to a spouse.

The book ultimately calls for a reimagining of care as a collective responsibility. What would that look like in practice and what would need to change to get us there?

On the larger political level, we can identify the root source that is ableism and ask for more humane care systems. People working in the care movement are already advocating for various policies to do just that. We need universal healthcare and universal long term care, but without larger cultural change, I find it hard to imagine that happening. So individually, we have to do better at thinking beyond the nuclear family as a site of care and extend care outward in more deliberate, purposeful ways (though I recognize so many people, mostly women, take care of many in their communities already!). There’s also much to learn from disability justice communities where the social technology of care collectives are being devised to distribute labor. Finally, I think cultural change starts with each and every one of us getting more comfortable with needing and receiving care, with talking about what we need, with loving our imperfect bodies, and with making real authentic space for people to tell us what they need too.

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