Lately it’s gotten worse. A letter earlier this month made me feel suddenly lightheaded as my vision started to fade. As I sat on the floor, my mind raced through all of the potential bad news the envelope could contain for a disabled Supplemental Security Income recipient like myself.

Many more people could soon be in the same position, more often. A new proposal from the Social Security Administration would cut $2.6 billion dollars over the next decade from the two core programs it runs that comprise the disability safety net: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). The cuts would start with letters — 2.6 million more of them.

A letter is the first notice a disabled recipient of SSDI or SSI gets that they’ve been selected by Social Security to undergo a “continuing disability review” (CDR). As the agency puts it, CDRs are used to “determine if disabled beneficiaries still meet the medical requirements for eligibility.” In other words, a CDR is a kind of “are you still disabled enough for SSI or SSDI” audit.

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After the audit, if Social Security believes a beneficiary’s medical condition has improved such that they no longer meet Social Security’s stringent criteria for disability, their benefits are terminated. It is now much easier for Social Security to say that a disabled person has medically improved thanks to a 2017 rule change that allows the agency to disregard medical evidence from a beneficiary’s own doctors. Benefits are also terminated if the disabled person does not respond to the CDR.

The Social Security Administration is proposing a dramatic ramp up in the number of CDRs it conducts, adding an additional 2.6 million of them over the next decade. And that’s not the only change Social Security wants to make to the CDR process.

When an applicant is approved for disability benefits, Social Security assigns them to a category that determines how often they must go through a CDR. If Social Security thinks a disabled person’s medical condition is expected to improve, they set a CDR for every 6 to 18 months. If it’s possible the medical condition will improve, they set a CDR for every three years. And if the person’s medical condition is not expected to improve, they set a CDR for every 5 to 7 years.

Social Security officials want to create a new category, “medical improvement likely,” that will get a CDR every two years. And they propose to move hundreds of thousands of people from less frequent CDR categories into the new category.

The vast majority of disabled people receiving SSDI and SSI are not represented by counsel through the CDR process. The maximum amount that SSI will provide to a disabled beneficiary is just 74 percent of the federal poverty level — currently $12,490 for an individual. As of November 2019, the average SSDI benefit was just $14,855 per year. Most SSDI and SSI beneficiaries simply do not have the money to hire someone to help them navigate the CDR process. Instead, they find themselves facing the byzantine, and all too often hostile, bureaucracy of the Social Security Administration on their own — something that I find daunting even with the benefit of a law degree.

Social Security is also proposing to focus the targeting of those CDRs on disabled children, people with certain medical conditions such as leukemia, and disabled older adults. Under the new rule, many disabled children would face a mandatory CDR at six years old and another mandatory CDR at 12 years old.

In both adults and children, the rule would change the category of certain mental health conditions including anxiety-related disorders, depressive, bipolar and related disorders, attention-deficit hyperactivity disorder, and impulse control disorders to a CDR every two years.

But Social Security has not provided estimates of how many disabled people from each of those groups will be impacted. In fact, Social Security hasn’t released any estimates of how many people will be impacted, period, only the number of CDRs it expects to undertake. (A single person could face multiple CDRs in that time period.)

Kathleen Romig, a senior policy analyst at the Center on Budget and Policy Priorities, explained by email that “SSA provides no estimates of the number of people who would be affected. No number of people who will be subject to additional reviews. No number of people who will be terminated.”

Instead, Social Security just published the projected cuts of $2.6 billion. That leads Romig to believe the agency has data it isn’t releasing: “They DO have a number of program dollars saved — in fact, two numbers, one for SSDI and one for SSI. I think it stands to reason that SSA has estimated how many disability beneficiaries would be cut off and they are withholding it. I’ve never seen the estimated number of people left out of a proposed rule; it’s a vital piece of information.”

The rule is open for public comment on regulations.gov until January 31, 2020.

An Instagram story from a low-pain day or a Facebook post with an old photo might be used against an applicant for disability benefits, a change from the status quo where the agency only looks at social media in cases of suspected fraud. Thanks to a New York Times story suggesting a tiny line item in the agency’s 2019 fiscal year budget overview will turn into a real policy, the disability community is very worried.

All this for an agency with a “fraud incidence rate that is a fraction of one percent.”

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The proposed expansion of social media monitoring for the nearly 20 million Social Security Disability Insurance and Supplemental Security Income recipients would have several negative effects, among them that disability activists who organize and build community online may be hesitant to do so. It will also feed directly into myths about Social Security fraud that have been wildly overstated in media coverage, such as a 2017 Washington Post series or a 2013 NPR feature package that made it seem as though “undeserving” people were lining up for disability benefits. (The average monthly benefits are under $1,300; being on disability is hardly a profitable endeavor.)

Proposals like this one underscore the common belief that everyone applying for disability is fake until proven otherwise. “I hate the assumption that everyone’s lying just because they need help,” said Rachel Graves, a member of the chronic illness community who receives disability and private insurance coverage, and who is already very cautious about her online presence. Graves is well aware that social media is used to police disabled people online by the government and insurance companies, as well as the general public, who are all seeking out disabled people who don’t “look sick.”

In response to the news, Mila Johns, who has Ehlers-Danlos Syndrome, a connective tissue disorder, deleted her Facebook account and plans to scale back on Twitter: “It seemed like too big of a risk to take by continuing to engage in social media. Because we don’t know how it’s going to be used.” Johns relies on communities found through sites like Facebook and Twitter to connect with people who share her diagnosis. “[Social media is] a lifeline for so many people,” she said, but she’s preparing an application for disability benefits, and she’s worried about what examiners might find, and judge.

The internet is valuable for outreach and advocacy, but also activism. Online organizers have used social media to fight attacks on the Affordable Care Act, organize in defense of the Americans with Disabilities Act, and engage in solidarity actions with other marginalized communities. Disabled advocates such as Imani Barbarin, creator of hashtags such as #AbledsAreWeird and #ThingsDisabledPeopleKnow, and Alice Wong, founder of the Disability Visibility Project and one of the co-partners of #CripTheVote, rely on social media for their work.

Images of disabled protesters went viral in 2017 during the fight to preserve the Affordable Care Act. Those same protesters now get to worry about whether those pictures will be used against them to deny or revoke disability benefits; if you’re well enough to occupy the halls of Congress, surely you’re not “really disabled.”

The agency already has an entire trained investigative division that focuses on preventing fraud before it even happens, in addition to following up on complaints about current beneficiaries. It also uses predictive analytics software to flag suspicious activity among both applicants for and current recipients of disability benefits. (Like other uses of predictive algorithms, this has dangerous implications, requiring applicants and recipients to submit to the surveillance state’s collection and use of their data. Algorithmic bias is also a significant concern.)

Now, in addition, the new proposal would allow thousands of front-line “disability adjudicators” all across the country to conduct their own fraud investigations using social media data. These are the staff charged with determining whether a claimant meets the agency’s stringent criteria for disability benefits.

On average, they are not very accurate.

In 2016, disability adjudicators approved 33 percent of initial disability applications and denied the other 67 percent. Claimants whose applications are denied have the right to appeal and have their case heard by an administrative law judge. After waiting one to two years to have their appeals decided, 46 percent of claimants are ultimately found to be disabled by Social Security.

In other words, nearly half of the people whom disability adjudicators rule as not disabled are actually determined to be disabled when they have their day before a judge.

In this climate, it’s easy to understand why disabled people might be afraid, and the consequences of curtailing social media engagement can be immediate and painful. “It is so isolating being really sick, especially when you have something unusual enough that you don’t know anyone else who has it. To find someone like you can make you feel less lonely,” said Graves.

The proposal also aligns with a long history of claiming that programs like SSDI and SSI are rife with “fraud.” For those concerned about fraudulent applications, the Social Security Administration maintains a fraud hotline and encourages not only workers, but also law enforcement and members of the general public, to report suspected disability fraud, in a “see something, say something” approach that encourages people to inform on each other.

This is the dangerous crux of the proposal: It will have a silencing effect on disability advocates at a time when they have won several high-profile victories with the assistance of online organizing, such as helping to prevent the repeal of the Affordable Care Act. Expanding the use of social media in disability determinations could become punitive in nature, with poorly-trained adjudicators dealing with large caseloads making snap judgments about applicants, particularly those with outspoken political leanings. Disability activists who don’t “look disabled” or have variable experiences of disability, such as part-time wheelchair users, could pay a high price for leading public lives.

The proposal can be operationalized administratively, without Congressional action, though Sens. Sherrod Brown (D-OH) and Bob Casey (D-PA) have expressed concerns about it. But it will make the internet less safe — especially for people like Johns who are primarily or entirely homebound and use it as a vital tool for participating in society. And it will make organizing harder for a fractured community that’s currently relying on the internet to help with the fight against dangerous, disablist policy proposals on the state and federal level.

Now, Congressional Republicans are trying to make it even harder for the frailest, poorest, and most vulnerable Americans to access food assistance. They seek to impose harsh new work requirements that will force some of the most marginalized Americans to run a convoluted labyrinth of wage and hour verification paperwork over and over again.

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It is a transparently cynical move to chop the program and take food from people who are hungry. Even those who do everything the system demands will be denied assistance—and I am absolutely certain of this, because it almost happened to me.

A few years ago, I was sick and getting sicker. I was not yet sick enough for surgery but far too sick to work.

I have Crohn’s, a chronic, incurable inflammatory bowel disease that causes my immune system to shred portions of my own small intestine. On a certain level, it’s a simple plumbing problem: the small intestine is like a long flexible pipe that brings food from the stomach to the large intestine, winding and twisting back and forth in the abdomen. When scar tissue builds up, it constricts the pipe, making it too narrow for most foods to get through. And then the pipe can clog.

Those clogs are called “small bowel obstructions” and, unlike a backed-up sink, they’re a potentially life-threatening medical emergency. I’ve experienced the special hell of having a tube shoved up my nose, down my throat, through my stomach and into my small intestine. I’ve watched as that tube sucked small bits of almond out through my nose. And, with some of the finest professors of surgery Harvard Medical School has to offer, I’ve discussed the odds that I’d live through emergency surgery if suction didn’t work.

After the almond incident, my physicians prescribed a strict low-residue and low-FODMAP diet. I was highly motivated to adhere to it; I understood the stakes. But as I got sicker and became unable to work, I could barely afford any food, never mind the diet my physicians prescribed. I didn’t have any income. So I applied for SNAP.

First, I faced an extensive application. But, more importantly, I was told that a face-to-face interview was required, and that the Massachusetts Department of Transitional Assistance (DTA), the state agency charged with administering SNAP, scheduled the interview on their timetable. As an applicant, you showed up when they told you, where they told you—or no food for you.

My life at this point consisted of debilitating symptoms: constant diarrhea, severe abdominal pain, nausea that even powerful prescription anti-emetics barely controlled, anemia, arthritis, and crippling fatigue. But despite my failing health, I had not been declared disabled by any government agency.

Under the current SNAP eligibility rules, an “Able-Bodied Adult Without Dependents” (ABAWD) between the ages of 18 and 49 can only receive 3 months of SNAP benefits in any 3-year period if they do not meet the existing SNAP work requirements. Yes, there are already work requirements for SNAP, but Congressional Republicans are pushing for still more draconian rules. They assure us that just as disabled folks are supposed to be exempt under the current rules—an exemption that has proven elusive—they will be exempt under the new regulations, too.

However, proving disability to the government is exceedingly difficult. First, it virtually requires ongoing, meaningful, affordable access to comprehensive medical care. Without medical records, government agencies are loathe to find an applicant disabled. (Yet, conservatives are also working to roll back access to health care at every turn, including by imposing work requirements on Medicaid, making care even more of a challenge to obtain.) Proving disability also often requires the cooperation of overworked health care providers in completing legal forms they’re not trained to deal with. Doctors are taught to diagnose and treat, not judge someone’s capacity to work against specific, highly technical legal criteria. And it means a lot of work for the applicant—work they may be too sick to do.

When I was eventually healthy enough to apply for Supplemental Security Income (SSI), it took dozens of hours of work from me to gather, review, and collate my voluminous medical records (over 500 pages). It took even more time to complete the application forms Social Security sent me. I approached the work and writing that formed the basis of my SSI application like it was an appellate case before the Massachusetts Supreme Court. In total, just applying for SSI took me more than two months of working whenever I was medically able. I was fortunate enough to get approved for SSI at the initial application stage. Many people my age don’t.

Because I was so sick, I asked DTA to conduct the interview for my SNAP application via telephone. I also asked that the call be in the afternoon because my symptoms were a bit more manageable then. As an attorney, I had the benefit of knowing that the Code of Massachusetts Regulations, part of the law that governs SNAP applications, required that DTA grant my request. But DTA didn’t reply—or at least, I thought they didn’t reply.

Despite giving DTA my full, complete, and correct address, that’s not where they were sending letters. They failed to include my apartment number on the mail they sent me. (As if I lived in a house, when I couldn’t even make the rent on my half of a tiny one-bedroom apartment.) DTA screwed up, I never got their mail, and I wasn’t receiving SNAP.

I called my DTA caseworker, just as I was supposed to do. I would call and then wait on hold for 30 to 45 minutes. An operator would then answer, and transfer me to a voice mailbox. (I wasn’t given the option of directly dialing the extension.) If the voice mailbox wasn’t full, I would leave a message. If it was full, which was usually the case, I would have to start over. After another 30 to 45 minutes on hold, I’d ask the operator for a different case worker, and leave that person a message. I repeated this process daily.

While waiting for DTA to return my many messages, I could never, ever allow the phone to go unanswered—they simply wouldn’t try calling again. No matter how sick I was, no matter if I was vomiting or toileting or running a 103° fever, if I missed a phone call from DTA, during my next interaction with them, they’d accuse me of “non-compliance.”*

Usually the person returning my desperate messages was someone who didn’t “know the file” and whose only reply to my desperate questions like “What do I need to do in order to schedule the formal interview?” was “Sorry, can’t help.” I was slipping through the cracks.

Because I am a lawyer, I knew that if I could somehow hang on long enough, I could eventually get my case before an administrative law judge. And, because I am a lawyer, I knew how to keep a log of every single SNAP related phone call I had in a way that a judge would understand and likely find credible. I knew which conversations I was legally allowed to record, and which I wasn’t. I knew what was important to include in the notes I took during every call. Or I did sometimes. Other times the pain, the fatigue, and the brain fog from the methotrexate—a chemo drug used to treat autoimmune diseases—was too much and I couldn’t think straight. I could only hope they didn’t call then.

And then one day, after weeks of waiting and dozens of hours spent trying to fight my way through the red tape, I finally got a piece of mail from DTA. I opened the letter outside. It was summer, and I wasn’t supposed to be in the sun because of one of the medications I was on. They denied my application because I didn’t attend the “in-person interview.” I sat in the street and cried—and I wasn’t supposed to cry, either. After choking down homemade oral rehydration solution, I got to work on this:

What you’ve just read is, essentially, a legal complaint and a motion for a hearing before an administrative law judge. Although the letter is just two pages, dozens of hours of research went into drafting it. Not to mention four years of college, two years of public health graduate school, and three years of law school that enabled me to research the pertinent state and federal statutes and regulations, as well as find and analyze all the relevant legal rulings. In response, DTA reversed the denial and awarded benefits retroactive to the date of my SNAP application. The entire process had taken 10 weeks.

My question for Congressional Republicans is this: Could you—while in constant pain, malnourished, dehydrated, and terrified of eating the wrong thing because it could kill you—have done better? Adding more punishing work requirements for nutritional assistance will harm some of your most vulnerable constituents.

In the wealthiest country in the world, you shouldn’t need to be a lawyer to get a little help with food.

* Editor’s note: A DTA spokesperson says that subsequent to the author’s applying for benefits, the agency has made numerous “reforms,” including: a “simplified SNAP application,” a mobile app for smart phones, a web-based portal for clients “to self-service and view their information,” and allowing any available caseworker to assist an applicant.