Last week, Sen. Tim Kaine, a Democrat from Virginia, announced that almost two years after he contracted Covid-19, he has lingering effects from the illness. The senator, who described having a “24/7” tingling sensation, told The Washington Post on Wednesday, “I tell people it feels like all my nerves have had like five cups of coffee.”
That day, Kaine announced legislation that would improve research on the effects of the condition while also trying to improve access to services for people who need them.
One study found that about half of the people who contract Covid-19 will have lingering symptoms.
One study found that about half of the people who contract Covid will have lingering symptoms, which means Kaine and the many people who experience so-called long Covid can be considered part of one of the largest minority groups in the country: the disability community. As disability rights activist Rebecca Cokley has written, the term “disability,” as defined by the Americans With Disabilities Act, is broad and inclusive enough to welcome various people who otherwise would not be considered disabled.
The Centers for Disease Control and Prevention says people with long Covid experience “brain fog,” fatigue or symptoms that worsen after physical activity, among others. This could impede people’s ability to work long term or limit the type of work they can do.
These new denizens under the broadening tent of disability will redefine what the disability rights movement will look like, as veterans of the United States' wars, polio survivors and people who are victims of gun violence did before them. They will force America to rethink how it must remain accessible to people with disabilities.
Kaine introduced the legislation with Sens. Ed Markey, D-Mass., and Tammy Duckworth, D-Ill., who became disabled after losing both of her legs when her helicopter in Iraq was shot down.
It’s important that the bill include not just research into the illness but also expanded access to services. Sadly, many of these newly minted Americans with disabilities will find that accessing the services can be just as grueling and debilitating as the actual effects of long Covid. America’s safety net is already strained; it’s not strong enough to adequately serve those who have been requesting services even as Covid causes a whole new swath of people to request them. Still, Washington has appeared uninterested in fixing that safety net.
The clearest example of this comes in Supplemental Security Income, a cash welfare program meant to help blind and disabled people meet needs like clothing and shelter. But the program imposes Spartan restrictions and is only accessible to single people with $2,000 or fewer in assets and married couples with $3,000 or fewer. That asset limit means people who marry are often denied SSI benefits or have their benefit levels reduced, as one 2008 report from the Congressional Research Service found. Married people who have recently been disabled by long Covid may be in for a shock when they learn that their marriage to the person they love means they could be denied an essential welfare program.
That limit on assets has not been updated since 1989. As University of Chicago professor Harold Pollack has written, if SSI asset limits had kept pace with inflation, they would be $9,500 and $12,675. But those dismal savings levels often prevent people with disabilities from being able to have any kind of financial stability or semblance of comfort. For context, the maximum monthly benefit amount for recipients is $794, which is about 74 percent of the federal poverty level.
All of these onerous restrictions make receiving SSI as degrading as possible and results in people who receive SSI fearing going one dollar above $2,000 lest they be sent into financial ruin. Social Security and Social Security Disability Insurance are paid for with payroll taxes, which solidifies the idea that they are “earned”; SSI is paid for with general revenue and income taxes, solidifying the idea it wasn't “earned.”
Married people who have been disabled by long Covid may be in for a shock when they learn their marriage means they could be denied an essential welfare program.
That stigma likely explains why SSI has been allowed to wither on the vine. Even 35 years ago, at a 1987 hearing, it was called “The Forgotten Safety Net.” It is a safety net with fibers that are slowly tearing apart, and now people who are newly disabled might fall into a net that risks tearing beneath them.
The cruelest aspect of all this is that the fixes to SSI are simple. Congress could index the asset limits to inflation, so disabled people’s savings don’t have to be at starvation levels. During his presidential campaign, Joe Biden endorsed lifting the marriage penalty and raising the federal benefit rate to 100 percent of the federal poverty level.
However, the administration excluded these fixes from Biden’s proposed "Build Back Better" plan as a means to appease fiscal conservatives within the party, including Sen. Joe Manchin of West Virginia — only for Manchin to still announce his opposition in December. It is also highly unlikely that they would be included in Manchin’s supposed slimmed-down offer.
Sadly, it appears that the induction into the disability community for those who have long Covid will require them doing the same thing their predecessors did: raising hell to receive basic necessities.