This Is Why We Can't Have Nice Things (Like Equal Rights)

Recent news of changing policies in regards to surveillance of people receiving disability benefits has caused an uproar in the disability community, as it should. If you're not familiar with the proposed changes, here's the (extremely) short version: The Trump administration is proposing that the social media accounts of people receiving social security disability benefits be monitored to determine whether or not those individuals qualify for benefits and to crack down on fraud.

The problem with this strategy is that policymakers are working under the assumption that a person's level of disability can be determined by the content they share online. If you have a disability, you're probably already rolling your eyes at the absurdity of this. If you're not disabled, and you're wondering what the problem with this assumption is, here are five reasons you should be outraged by this policy:

1. Most disabilities are not visible.

About 10% of Americans live with a chronic condition that could be considered an invisible disability. 96% of people with chronic conditions live with an invisible illness, and about 25% of them have some type of activity limitation due to their illness. In fact, 73% of people who live with a severe disability do not use mobility devices like wheelchairs. The universal symbol for accessibility - the stick figure in a wheelchair - actually represents a small minority of people with disabilities, yet we tend to view disability as something immediately apparent.

​The bottom line: disability isn't something you can see. People with disabilities wear makeup, do their hair, have social lives and even work out! None of this means that we don't struggle with certain tasks on a daily basis or have to make significant sacrifices to continue living as normal a life as possible.

2. Every individual's experience with disability is different.

Disability and chronic illness affect everyone differently. Symptoms and limitations vary, not just between people, but from day to day. Just because someone can perform a physical activity doesn't mean someone else with the same condition can perform that activity, or even that they'll be able to do that same activity tomorrow. 

Even for someone who's lived with a disability for years, it can often be unpredictable. It's not always possible to know what activities will be off-limits ahead of time or when symptoms may flare up, making simple tasks suddenly impossible. This doesn't mean they're "faking" it. It's just the nature of disability.

3. You can say goodbye to advocacy and outreach.

The social stigma surrounding people with disabilities, especially invisible ones, has been slow to improve. It's literally taken our culture centuries to get to the point where we actually view people with disabilities as human beings with inherent value (and many people still don't!). We still have a long way to go. The internet, and specifically social media, has given a voice to advocates and opened a new world of possibilities for people with disabilities who were once socially isolated. 

The fear of losing needed income and healthcare means that disability advocates may no longer feel safe sharing their stories or reaching out to others in the disability community online. The reality is that this could set us back decades in the fight for equal rights and understanding, all while limiting access to resources for people who need them. 

4. Social media isn't an accurate representation of our lives.

By now, we all know that social media is simply a "highlight reel" of the most photogenic moments in our lives. According to this article from Huffpost, women spend 16 minutes perfecting each selfie they post, which adds up to five hours a week on average. The last thing we women are doing is posting selfies with messy hair and bags under our eyes, even if that's what we look like 95% of the time. And that photo of your cousin smiling at her best friend's birthday party? (She looks like she's having a great time!) What you won't see are photos of the next three days that she spent in bed, recovering from the enormous effort it took to spend an hour or two with the people she loves, while smiling through the pain. 

If that's not enough to convince you that social media isn't a reliable resource, another study found that almost a quarter of everything you see on social media is either faked or exaggerated. It's simply not a good source of accurate information.

5. The most likely outcome of this policy will be cutting benefits for people who desperately need them to survive. 

The incidence of fraud among Social Security disability beneficiaries is already at a staggeringly low fraction of 1%. Despite myths that disability fraud is a common occurrence, it's actually far more common to be denied disability benefits - even when you really do have a severe disability.

The most likely outcome of the new surveillance policy will be the termination of benefits for people who desperately need them.

To learn more about the policy and its dangerous consequences, check out these articles:
​
A Trump Proposal Could Make Selfies Dangerous for Disabled People
How a Trump Proposal Could Reduce 'Happy' Disabled People

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References
The Facts About Social Security's Disability Program
Social Media is a Highlight Reel - Not 'Real Life'
Looks Can Be Deceiving
Invisible Disabilities