The U.S. government wants to use your Facebook posts to decide if you’re disabled.
According to the New York Times, the Trump administration is proposing that Social Security Administration officials routinely examine the social media accounts of people who have applied for or receive disability benefits as part of determining whether they qualify. The policy is not specifically outlined in Trump’s recently released budget, though it does mention allowing the SSA to “use all collection tools to recover funds in certain scenarios.” The budget would have to be approved by Congress before going into effect.
This proposal has alarmed disability advocates all over the country. However, most of the objections raised in the media have failed to address the real dangers of such a policy to individuals with disabilities and the disability community as a whole.
In an Engadget report on this issue, Electronic Frontier Foundation senior staff attorney Adam Schwartz said, “When a disabled person posts a picture of themselves doing something a disabled person should not be doing, it is not necessarily evidence of fraud about government disability benefits.”
Attempting to determine whether someone is disabled using social media can only be done by relying on inaccurate, damaging stereotypes about what disability looks like and what disabled people can and can’t do. It’s based on the false assumption that if someone is “really” disabled, they must be utterly miserable, stuck at home all the time and unable to function in life. If they aren’t, they must be faking and living it up on the government’s dime. But that couldn’t be further from the truth.
The New York Times article states that examiners could look at social media for evidence that a person is working or is able to work. But what exactly does “disabled” look like? How a person appears in photos and videos tells you very little about their physical and mental health. Just because you see someone doing something doesn’t mean they can do it on a regular basis, and you can’t see how much pain they’re in or the price they pay afterward.
Stories and studies have shown that people often present themselves in the best possible light on social media, smiling even when they’re in pain and struggling. People with disabilities may share the joy of having a good day, joining their family for a backyard barbecue or even going on vacation. They may or may not feel comfortable talking about medical appointments, treatments and bad days when just getting out of bed hurts.
If someone mentions “working” on social media, that could mean a lot of different things. Perhaps they volunteered at the animal shelter or sold handmade jewelry at a local market. It doesn’t mean they are capable of SGA (substantial gainful activity), the measurement of ability to work under Social Security rules. They could be working and earning under the SGA limit, or be employed while receiving benefits, which is possible through the SSDI ticket to work or a state Medicaid working disabled program. If they have impairment-related work expenses such as out-of-pocket medical bills or privately-paid personal attendant care, they can deduct those costs from the income they’re allowed to earn while receiving benefits.
There are people with physical disabilities who ski, skydive and ride horses. These activities can be therapeutic and improve physical and mental health. They have nothing to do with whether someone requires disability services.
SSDI and SSI are not an easy path to “free money.” Qualifying for these programs involves complicated paperwork, medical exams and months or years of waiting. Most applicants are turned down the first time and must go through an appeals process that usually takes years and involves being questioned and doubted at every turn. Mighty contributor Sunny Ammerman described the ignorance she faced from a “vocational expert” at a grueling SSDI appeal hearing she recently endured:
She said I could work in a call center. Did she not hear me when I told the judge that my optic nerve hypoplasia causes me to have to take breaks from looking at computer screens so I don’t get intense headaches from eyestrain? … She said I could work as a ‘line worker’ assembling simple parts in a factory. Did she not hear me explain that my bouts of fatigue cause me to have to lie down at a moment’s notice? What factory foreman is going to put up with that?
Ammerman’s lawyer argued strongly against the “expert’s” poorly-justified assertions, but as of this writing, she’s still waiting to find out if she got approved.
People with disabilities who make it through this agonizing process and obtain benefits do not sit around getting rich off government funds. The money is usually not even enough to afford basic necessities. Could you get by on $771 per month, the SSI benefit for 2019? SSDI is typically a bit higher, with the average around $1,200 per month. That’s still not enough to live on in many places, and certainly not enough to be worth fighting for benefits if a person has other options. Many people with disabilities have no choice but to work a little while on benefits even if it’s a struggle because the alternative would be homelessness.
For others, the most important part of qualifying for SSDI or SSI is having access to healthcare through Medicare and/or Medicaid. People with significant physical disabilities who need personal care assistance for tasks like dressing and bathing have no choice but to obtain disability benefits because no private insurance pays for in-home care. They may want to and even be able to work, but must utilize limiting “working disabled” programs to keep their Medicaid attendant care.
The Social Security Administration already puts people through hell just to get what amounts to a very small, frankly inadequate amount of support. And now they want to spy on our social media too?
The idea that a productive day or a smiling photo could put people with disabilities at risk of losing the services we need to live is absolutely terrifying. I am a travel blogger, so I have pictures and video of myself at locations all over the country going to concerts, visiting the beach, camping and living my life to the fullest. I was in pain or exhausted when some of them were taken, but you can’t see that. I had a Medicaid-funded personal care assistant with me to help me bathe and dress, but she’s not in the pictures. However, you can see my wheelchair, which proves that enjoying life and posting about it online doesn’t mean someone isn’t disabled. I am rocking out to music while disabled, enjoying the ocean while disabled, and exploring the woods while disabled. I’m severely disabled and I can live my life because of SSDI, Medicare and Medicaid. Will I now be punished for actually doing so?
Government surveillance of social media puts all people with disabilities in danger, but would disproportionately harm those whose conditions don’t have obvious external signs or require the use of mobility aids. People with invisible disabilities already struggle to get the support they need because strangers, doctors, friends and even family members dismiss their needs and say they “don’t look sick.” They would be the first targets in what amounts to a modern-day witch hunt against those perceived as “not disabled enough” in the eyes of the public. If they do the things I do without visible “proof” of disability, they’re far more likely to be questioned and doubted, which is both unfair and dangerous.
Judging the legitimacy of disabilities based on social media posts could cause disabled people to lose life-sustaining services and even lead to violence. For evidence of this, we need only look at the U.K., where government rhetoric surrounding benefits fraud has contributed to a steady increase in hate crimes against disabled people. Many have reported being verbally and physically attacked by strangers who use epithets like “scrounger” to suggest they are faking their disabilities and abusing the social service system.
This proposal and other similar recent policies such as electronic visit verification treat people with disabilities like criminals, subjecting us to invasive surveillance with no right to privacy and no due process. They’re based on fear of fraud — but that unfounded fear causes real harm to real people with disabilities every day.
People who become disabled later in life often struggle with shame because our culture has placed such a stigma on those who receive disability benefits. They may feel guilty on days when they feel well and even question whether they are deserving of help. The Internet is a powerful tool to combat this stigma because it enables us to share our accomplishments and demonstrate how much people with disabilities can do when we have the support services we need.
People with disabilities can find emotional support and practical advice in online communities like The Mighty. Every day when I read through comments on articles here, I see someone whose life was changed because they found a story by a contributor with their rare disease and now know they’re not alone. I see someone who feels hopeful because a contributor with the same condition as their child went to college and became a teacher. I see someone who joins the fight for disability rights because they read an article about ableism in society and realized we all deserve to be treated with respect and equality.
But what happens if these voices go silent out of fear? How can a person connect with others when they constantly have to wonder if what they say online will be used to hurt them? How can they stop worrying that an ignorant government employee who believes people who receive benefits don’t deserve to be happy could target them because they live joyfully with a disability, or just don’t fit into stereotypes about what disability looks like? Government spying on disabled people could decimate disability support communities and force role models and advocates whose lives hang in the balance to retreat into the shadows. There would be no one left to counter the stereotypes, to show that life with a disability is worth living.
You can be happy and disabled. You can be active and disabled. You can do things people think disabled people can’t do and still be disabled. The Trump administration — and the public — need to understand that disability doesn’t have a look. It often isn’t visible. Government support programs that actually work should empower people to get the care they need and find joy in life, not live in shame and fear.