U.S. Government Wants to Use Social Media to Decide Who Is ‘Disabled Enough’ for Disability Benefits

U.S. Government Wants to Use Social Media to Decide Who Is ‘Disabled Enough’ for Disability Benefits

U.S. Government Wants to Use Social Media to Decide Who Is ‘Disabled Enough’ for Disability Benefits

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.

11 Responses

  1. READ MY COMMENT, NOT BETWEEN THE LINES! There ARE SOME people who abuse the system – it’s a fact! That is all I said. I don’t understand why you are overreacting and putting words in my mouth! I’m done arguing with someone who can’t understand what they are reading!

    • This was supposed to be directed at Jenifer. Also, I disagree with any plan to try to catch people cheating the system by looking at their FB profile. That’s just stupid – just as stupid as punishing pain patients for the actions of street drug addicts!

  2. This shows lack of energy. The is is laziness and must cause harm. What they needed to do was confirm the original reward of disability with some real world leg work. They didn’t do it then and this became a “good” reasons to deny those qualified and bad reasons to approve those unqualified and now they want to work even less hard. Who will have time to look at all of those profiles and make a guess, why not just visit the applicant in person? It’s no different than doctors guessing what your illness is or is not from old exams and old notes.

  3. Unfortunately, there ARE people who abuse the system and get benefits when they are perfectly capable of working which is why it’s so hard for those who really need it to get it, and why they are still trying to find ways to avoid having to pay it!

    • And you are a Doctor of??What college did u get your medical degree at?Just curious,,,,maryw

      • I’m a RN and have been in the medical field for 40 years. It doesn’t take a medical degree to know that there ARE many who abuse the system – SERIOUSLY! It’s been going on for years, and again, this is why those who need it, have to fight so hard and many who need it, never get it! Some people will abuse anything, because they feel they are entitled to it just because it’s available from the government (for those who really need it! BTW, I am also disabled (but still try to work some) and a very loud advocate for chronic pain patients!

        • You would probably say that about me because I can still do some physical activity but that does not mean I can works 40 hours a week along with driving to work, and the stress and the rest of it. Meanwhile you are not in my home when I may spend 1 hour doing something but the entire next day in bed resting. Also how do you judge some one who has a mental disorder like schizophrenia or some other disability by a picture where it is almost impossible for them to find a living wage job let alone someone who would hire someone with those disabilities. Yea, I can work a day a week or two for maybe 6 hours but I cannot live on that and under the VA system which is based on your education and training that if you make one dime though work you lose about $40,000 of benefits a year. This is just another attack and disability is not easy to get either. Also SS is hardly something people rush to get on because you are bankrupt by the time they decide you are disabled and you cannot be working while they take 3 years to decide if you are disabled or not. Everyone just wants to lose all there self-worth and purpose for $13,000 a month.. You being a nurse you should be the last one judging patients since you know people may feel better for a few days and then in beds for weeks afterward.. Yes maybe a few scammers get by but this will hurt a lot more people then they will catch. It is just like when Republican in FL wanted drug test if people were on food stamps. Well they wasted hundred of thousands of dollars and caught less then 1% showing up positive for illegal drugs. .They dropped the program 2 years later due to costs and basically ended up dropping about 20 people in the program. Not that you get rich with food stamps since the limit for a adult is $130.00 a month. Disability is based on case per case basis and not a quota systems. Unlike Medicaid SS disability is a insurance policy with the government that when we turn are certain age or get hurt to the point of not being able to work for a period of at least a year. Believe me just walking in front of a judge with a bunch of props without a very extensive medical records is not going to get. you SS. In fact more people are turned down then get it.

          • By the way, I am well aware of how people fake their disability to get benefits! I’ve seen it for myself many times. In addition, some people think one little injury should buy them a lifetime of living off the government when they are perfectly capable of working in ANY capacity after their initial injury heals. It’s sad and punishes those who really need it!

            • you’re right that it punishes those who really need it, & equally true that some unquestionably some abuse it.

              the whole country has apparently decided that the only way to go is to destroy the lives of millions because of the negative actions of a few a$$holes. This anti-opioid hysteria is just driving me completely insane.

    • No doubt those folks all live in mansions with all the rich welfare queens, and play polo on their highly registered polo ponies with them.

  4. Which section, page, paragraph refers to this possibility? Having a hard head pain day. I tried to locate it but my brain isn’t accepting this 150 page document even as a scan through.

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