Chronic Illness

The Stigma Of Fun When You’re Disabled

Why do so many people assume that just because I'm in too much pain to work, I shouldn't be allowed to do anything else?

I was sitting in an uncomfortable wooden chair next to my lawyer. My walker sat in the aisle next to me, and I rested my trembling hand on the handle. After over two years of waiting, I was finally there, sitting before a judge at my disability hearing.

The amount of preparation and work leading up to that point had been extensive. I’d filled out form after form detailing my symptoms and the way they impacted my life. Friends and family had written letters of support, and doctors had submitted paperwork. I’d given the Social Security Administration literal boxes full of medical records spanning the four years I’d been sick.

In that time I’d gone from working full time, to part time, to unemployed. I’d seen over twenty-three different doctors and specialists seeking answers and help. I’d taken medication after medication. I’d done therapy, an intensive pain management program, steroid injections, and massage. I’d tried yoga, pool walking, and biofeedback.

And yet still my symptoms persisted. I was in pain daily. Pushing through crippling exhaustion to perform even basic tasks, I struggled with depression, loneliness, and isolation. On top of that, I was barely holding on financially. All my resources were practically gone. So much was riding on this one hour with this one judge.

Are You Chronically Ill Enough To Satisfy A Judge?

He began his questioning, stripping back layer after layer of my life, until I felt exposed to the bone.

What was my diagnosis? What symptoms did I have? How did they impact what I could or couldn’t do? I taught a class two hours a week: if I could do that, why couldn’t I work more than that? What medications was I on? What were their side effects? How many hours, on average, did I spend in bed a week? How could I fulfill my parenting duties if I was in so much pain? The judge even asked if he thought my spouse had divorced me because I was sick.

The judge even asked if he thought my spouse had divorced me because I was sick.

The process of applying for disability benefits is highly demoralizing. Pages of forms ask you to list the activities you can no longer do. You are forced to focus on all the negative aspects of your disability: you’re questioned about everything you do, the way you spend your money, even your relationships.

The paperwork, questions, and explanations all point to the main question the SSA wants to know: Are you capable of working a full-time job?

If You’re In So Much Pain, Why Are You Still Doing Things You Enjoy?

And then, just as I thought were were done, the judge paused and asked one more question.

One of those twenty-three doctors, in the thousands of pages of documents spanning over four years, had mentioned in their notes that I’d had a performance coming up. The judge latched on to that. My heart sank.

The judge asked me what the performance entailed. How long, exactly, was I on stage? What did I have to do with my body?

“5 minutes,” I said. “I use movement, poetry, and video to tell a story. I use my walker or cane during my performances.”

Did I have to carry anything? Did I memorize things to speak? What did I do before the performance?

“I don’t have to carry anything; there are stage managers for that,” I explained. “I can no longer memorize my poems, so they are always pre-recorded. Before the performance I just sit backstage and then after I’m usually shaking and needing to drink a lot of water and compose myself before I go home. After I go home I have to take a long bath and take extra medications. I’m usually in bed for a few days after a performance.”

“If performing takes such a toll on your body, do you continue to do it?”

The judge continued to ask questions; in fact, the line of questioning about my performance took longer than any other portion of the hearing. I was asked more questions about those five minutes on stage than I was about my symptoms, my daily life, or my attempts to work even part-time.

Finally, he asked: “If performing takes such a toll on your body, do you continue to do it?”

Through teary eyes I replied: “Because it is one of the few things in my life that brings me joy.”

The Stigma Of Fun When You’re Ill or Disabled

I wish I could say this was the only time I’ve ever had a conversation like this, but it’s not true. Acquaintances, doctors, and even friends sometimes want to know all the details of how I can do certain activities, if I can’t work. Because our capitalistic society is focused on ‘productivity’, there is an implied (and, all-too-often, spoken) idea that a disabled person who can’t work should deny themselves all the other things in life that make it worth living—joy, meaning, fun.

We live in a society where participating in hobbies or activities just for the sake of joy is not valued. Even well-meaning people fall into this trap, revealing themselves to believe that having fun is a ‘right’ that you need to earn through work. Other disabled people I know have recounted stories about being questioned about everything from going on vacations to taking short hikes to simply going out to eat.

I understand better than most that I have a limited amount of time on this planet, and that I’d better pack as much happiness and meaning into it as possible.

And yet—because daily life for myself and many other disabled people is hard both physically and emotionally–it feels even more urgent to me that we hold on tight to those things that bring us joy.

Happiness isn’t something we earn by going to work every day; it’s a gift we give ourselves. As a friend of mine one said: “We should be allowed to move through the worlds in whatever ways we are capable of.” If I push myself beyond my body’s limits every once and a while to experience joy, that doesn’t mean I’m not disabled, or that I’m capable of sustaining that degree of energy forty-hours a week. It means that, as a disabled person, I understand better than most that I have a limited amount of time on this planet, and that I’d better pack as much happiness and meaning into it as possible.

The True Cost Of Being Happy When You’re Disabled

The judge didn’t decide my case that day. In fact, it took six more months, and two additional hearings before he made a ruling. But ultimately, I was lucky: the judge decided the occasional performance did not negate my disability. I was granted SSDI.

Unfortunately, this does not mean my disability check is secure. In a 2018 budget request, the Social Security Administration proposed the ability to use Facebook and other social media platforms to monitor those applying for or receiving disability benefits. The claim is that this would allow SSA to better screen applicants, as well as investigate potentially fraudulent cases of people who are receiving disability benefits but are not actually disabled. While nothing has been approved yet, the current administration supports this proposal. A final ruling is expected in 2020.

If this is approved it could mean that those pictures I post on Facebook and Instagram, the ones taken on my ‘good days’ or when I’ve managed to muster up enough energy to go out and do something fun in the world, could be used as evidence that I’m not truly disabled. The posts I make could jeopardize my benefits. I will have to hide any joy I experience in my life, to ensure politicians and bureaucrats without any bodily ailments that I am joyless enough to eke out a meager existence.

I am going to pack as much joy into this life as possible. And no one has the right to take that from me.

But as my disabled friend Andrew Montgomery points out: “For the most part, no one outside your own bubble sees the true price disabled people pay for these moments of happiness: all the extra costs, and planning, and arrangements, and anxiety, and pain, and fear.” They especially don’t see the days of recovery that might follow a disabled person allowing themselves even one little thing that the able-bodied take for granted.

These aren’t the things posted on social media. As humans, we don’t post pictures of ourselves in pain. We post pictures of our happiest moments, so we can remember them later.

Which is why fun is so important to disabled people like me. It sustains us through our rougher times, gives us hope. So even if I can’t work 40 hours a week, I’m going to keep performing, keep camping, keep going out to eat, keep traveling as much as I can. I am going to pack as much joy into this life as possible. And no one has the right to take that from me.