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7 Things the Washington Post Missed About Disability and Caregiving

On August 6, 2021, the Washington Post published an article by Amber Ferguson entitled “Unpaid caregivers: How America treats women caring for paralyzed partners.” The story has brought attention to an important issue that is rarely discussed in the mainstream media — the systemic barriers faced by people with disabilities who need help with daily tasks and their family caregivers. However, it has also drawn the ire of the online disability community, with many advocates criticizing the author for perpetuating ableist stereotypes. Here are seven crucial aspects of disability and caregiving the Washington Post misunderstood or got wrong.

1. People with disabilities should be the leading voices in conversations about our care.

The disability community has a motto: “Nothing about us without us.” It means that our needs and our voices should be centered when people talk about issues that affect us. Often, the media doesn’t bother to consult us and instead lionizes non-disabled people for doing good deeds for us and not abandoning us because our bodies need care. For the Post story, the author could have interviewed both members of each couple and given equal time to their perspectives, but instead, she primarily focused on how hard life was for the non-disabled partners. And in a particularly egregious display of ableism, she actually omitted the disabled partners’ names from the photo captions, relegating them to the smaller text below.

2. So-called interabled relationships are diverse and they aren’t one-sided.

The term “interabled relationship” is problematic because it assumes that disabled people usually date other disabled people and that a disabled/non-disabled couple is some kind of anomaly. One in four American adults has a disability, and many disabilities are invisible, so relationships where one partner has a disability — or each partner has a different kind of disability — are extremely common. By only featuring non-disabled women and their male partners with spinal cord injuries, the author presented a narrow view of caregiving that excluded men who care for female partners and LGBTQIA+ couples. Their experiences matter too.

Ferguson perpetuates the damaging narrative that able-bodied caregivers are making a selfless sacrifice for someone who brings little to the relationship. The disabled partners are depicted as burdens, and on the rare occasion their contributions are acknowledged, they are immediately negated based on unrelated physical limitations. For example, the article states that Danny Pitaluga “drives and works as a specialist in human resources for Veterans Affairs, but he cannot dress, cook or tie his shoes without help.” In Ferguson’s worldview, disabled people only have value if we can work, but we still couldn’t possibly be equal partners in a relationship if we need help getting dressed.

3. The caregiver shortage is due to low wages, not the job itself.

Ferguson references a comment from a non-disabled spouse who said, “many people are unwilling to help her husband, who has a degenerative spinal illness, with his bathroom use and bathing.” In reality, hundreds of thousands of workers do those tasks every day, as nurse’s aides and personal care attendants in private homes, hospitals, and nursing homes. The issue isn’t that no one wants these jobs, it’s that Medicaid and other funding sources don’t pay enough to attract and retain compassionate, dedicated workers. Caregivers burn out from working two or more jobs just to support their families, and many leave to pursue better-paying healthcare careers such as nursing.

This problem has become even more acute in the wake of the pandemic, as many retail businesses have raised hourly pay while programs for people with disabilities are stuck with the low wages set by Medicaid. For example, in the state of Indiana, Medicaid pays Consumer-Directed Attendant Care workers $12.86 per hour, while local fast-food restaurants are now paying $14-$15. A job that should pay twice as much as flipping burgers now pays much less. This wage discrepancy has amplified the caregiver shortage, and many people with disabilities are going without help if they don’t have a way to supplement their caregivers’ hourly rate. Some have been forced to enter nursing homes, which are also understaffed due to low pay.

4. The “marriage penalty” often devastates the lives of disabled people and their partners.

The Post article discusses the issue of spouses often being deemed ineligible to be paid caregivers because of their income, assets and/or marital status. But that is just the tip of the iceberg. Private insurance through an employer or the ACA Marketplace does not cover long-term in-home care. Medicaid is the only option if you cannot pay out of pocket — and only the wealthiest Americans can afford $50,000+ per year to pay caregivers for people with spinal cord injuries and similar disabilities. Millions of families are caught in this donut hole of earning too much money to qualify for Medicaid home care but not enough to pay for it themselves.

While Social Security Disability Insurance (SSDI) payments aren’t affected by a spouse’s income, disabled people who receive Supplemental Security Income (SSI) will have those benefits reduced or terminated if they marry someone who has income. A spouse earning minimum wage would cause them to lose SSI and most likely Medicaid along with it. Even if they marry another SSI recipient, they will only be allowed to have $3,000 in combined resources (instead of $2000 as an individual) and make $1,191 per month in total as a couple. Nobody can live well on that, but millions of people have no choice but to try.

There are “working disabled” programs to help people who need home care keep Medicaid, but they only allow the disabled person to earn and save money they made from a job. Money and savings from a spouse still count against their eligibility. Tens of thousands of couples are unable to legally marry because one or both partners would lose access to in-home care — and many couples do get divorced on paper so a disabled partner can qualify for services.

5. Relying on just one person for care often isn’t safe or healthy.

Along with popularizing the awful term “interabled relationship,” Dr. Phil infamously told one non-disabled/disabled couple on his show, “100 out of 100 relationships that involve caregiving fail.” That is, of course, horribly ableist and false — but relationships where caregiving overshadows everything else can be stressful and harmful. To make a marriage work, each partner needs time to pursue their own career and/or hobbies, as well as time to just have fun as a couple. They also need the energy and desire to care for each other sexually and emotionally, which can be difficult if physical caregiving always takes priority.

Caregiving is hard work, even when it’s for someone you love, and some people are more cut out for it than others. Everybody needs a break sometimes, and the fact that the women profiled in the Post article are overwhelmed is cause for concern. And even if they’re coping psychologically, what happens if they get sick or injured? Spouses (and parents, adult children, and other relatives) should absolutely be allowed to be paid caregivers for their loved ones, but that doesn’t mean they should be the only caregiver. And it may be healthier for a romantic relationship if an able-bodied spouse is just the backup caregiver, or only helps with care late at night or when on vacation.

6. Domestic violence against people with disabilities is all too common.

When a couple is isolated and a spouse is a sole caregiver, abuse may go unseen and unreported. And when one partner depends on another physically and/or financially, it can be next to impossible to escape from an abusive situation.

While all three partners profiled in detail by the Post appeared to be loving and devoted, one of the other wives quoted at the beginning of the piece stated that she doesn’t want her husband to hire a caregiver because she “doesn’t want a third person in her marriage.” This raises red flags for me as an abuse survivor whose ex-spouse insisted on helping me at night while verbally abusing me and complaining that my care was difficult. Every time I suggested hiring a night caregiver, she told me no because having someone come in would “interfere with her quiet evening.” By then she had so thoroughly destroyed my self-esteem, I couldn’t see that it wasn’t her choice to make.

Whether we are single or partnered or married, people with disabilities have the right to decide who assists us with personal care. A hired caregiver is not a third person in a relationship, they are there to be the arms and legs of the disabled person and do what they would do themselves if they were physically able.

7. There is hope for overwhelmed families — and you can help.

The caregiving crisis has been going on for years, but we now have our best chance ever to change things. Two bills pending in Congress would transform the lives of millions of people with disabilities and their families and set them free from a life of forced poverty.

The Better Care Better Jobs Act would expand access to Medicaid home and community-based services by ending the waiting lists that have left 820,000 Americans without funding for care. It would ensure higher wages for caregivers, expand access to respite services for family caregivers and make it easier for people with disabilities to hire a relative through self-directed personal care assistance programs. It would also make protections against spousal impoverishment permanent, so that families do not have to spend themselves into bankruptcy for a spouse to qualify for Medicaid.

The Supplemental Security Income Restoration Act would increase SSI to the federal poverty level and require future increases based on inflation. It would allow beneficiaries to earn more than $500 per month in outside income with no penalty, raise the asset limit to $10,000, and allow family and friends to provide “in-kind support” such as food or a rent-free place to live. It would also reduce the marriage penalty by increasing the asset limit to $10,000 for single persons and $20,000 for married couples.

Please call your Representative and Senator and ask them to support these crucial bills. And if you’re a reporter who wants to shine a light on inequities in caregiving, please listen first to the voices of those who need care. We don’t need heroes or martyrs, we need support so we and our loved ones can thrive. Together, we can make the United States a better place for people with disabilities and caregivers.

Getty image by Prostock Studio.