October 18, 2016

We Need To Rethink Depression And Disability

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Priscilla Westra
Priscilla Westra

My depression nearly killed me from sleep deprivation and almost forced me to take a semester off from school, yet I did not imagine it could be a disability. Even during my fourth day without a minute of sleep, I did not feel disabled because I could still walk, talk and hear. Like most people, my perception of a disability was limited.

This changed during the last time I was job hunting. I consistently saw disability waivers on applications. Below them was a list of disabilities that included “major depression.”

It shocked me. I had not imagined my symptoms might entitle me to any sort of benefits or assistance from the government. I didn’t know people could see me as “disabled” or “someone with a disability.”

When I used to hear the word “disability,” I thought of “a lack of ability.” An “ability” meant a sense such as sight or hearing, or the ability to walk.

But what if getting up in the morning is an ability? Depression can actually be far more crippling than some forms of physical disabilities.

“A mental health impairment is a medical condition that disrupts their daily functioning.” said Dr. Jude Miller Burke, the former vice president of OPTUM, United Health Group.

“Getting out of bed, putting on clothes, driving to work, meeting deadlines, facilitating meetings, making presentations and communicating with others can seem almost impossible if someone is seriously depressed.”

The conditions Burke describe satisfy the idea of a disability and the definition certain organizations offer. A person with a disability has a physical or mental impairment that substantially limits one or more major life activity, according to the Americans with Disabilities Act National Network. They do not need to meet these requirements throughout their life but must at least have a record of disability or be “regarded as having a disability.”

Some of the legal definitions are a far cry from this. To receive any kind of disability benefit from the Social Security Administration [SSA] — for depression or something like requiring a wheelchair — people need to prove their condition has prevented them from working (this is a harrowing process).

This was the case for Laurie Juenman, a registered nurse who has suffered from “chronic treatment resistant depression” for decades and chronicled her experiences in her memoir, “Climbing the Mount Everest of Depression.” Juenman suffered from symptoms including suicidal thinking, loss of appetite, difficulty sleeping, low energy and trouble concentrating.

During email and phone conversations, I asked her about whether people should consider depression a disability. She believes depression can be a disability because symptoms such as hers have prevented people from working. The treatment for these symptoms can make it even more difficult to work.

Unfortunately, Laurie has dealt with the stigma of both depression and disability.

“I’ve heard comments like ‘Oh, you’re getting that free money,’” she told me during a phone interview. “I would love to be working, thank you,” she said, responding to that criticism.

There are others with disabilities who agree people should consider depression a disability. Some of them, however, think we need to differentiate depression from other forms of disabilities.

I spoke with Kevin, who permanently lost the use of his legs at a young age after suffering from spina bifida, a birth defect that causes part of the neural tube to fail to develop.

“Depression can be cured,” he told me in an email. “[My] disability cannot. One has hope, the other has none.”

Kevin and I agreed there are degrees of disabilities. Someone with a mild form depression is usually able to work a full-time job while someone with severe depression like Juenman might need to quit and receive benefits. There are people who need a cane or crutches — perhaps not for their entire lives — and then those who have no hope of leaving their wheelchairs.

A higher degree of physical disability does not necessarily mean a lower quality of life, though. The hopelessness of curing his illness did not rob of Kevin of a full life, despite assumptions his peers made.

“I was doing OK,” he said. “I was getting laid, drinking, having girlfriends. The way people saw me made it hard.”

And that’s the problem with how society perceives disabilities: We look at people with disabilities and assume how difficult their lives must be and how well they function. We see a man in a wheelchair and assume he is less happy than the woman standing next to him. But what if that woman is severely depressed to the point where she can’t work or has trouble doing so?

When I was in college and was diagnosed with depression, people could not see how much I was suffering. Nothing about my appearance communicated the nausea, weight loss, digestion problems, sleepless nights and muscle pain. No one could tell how much of a burden it was, how many days I pissed away attempting to catch up on my sleep.

Then I looked at my friend and colleague who permanently lost the use of his legs after a biking accident. We called him “Q,” and he was an impressive guy.

Q was so much happier and energetic than me. His life seemed rich with success, fun, friends and opportunities. He was capable, confident and cool. Stairs were the only obstacle he could not conquer, but that didn’t matter to me. His life was better.

We knew him, but strangers assumed he was unhappy because of his disability. I asked him about this in a Facebook message while I was forming the idea for this piece.

“People have always assumed my life is far less fulfilling because of my disability,” he said. “Shit makes dating real hard!”

But it doesn’t actually limit his quality of life, he told me.

“Who the hell wants to take stairs?” he added. Good point, Q.

Here’s a way I believe we should think about disability, a sort of new definition: If living a happy and full life is an ability, a disability is anything that significantly prevents that by degrading physical and mental health. If something limits someone’s physical abilities, but that person doesn’t believe it reduces how full their life is, maybe it isn’t a disability for that person.

These disabilities can fall on a spectrum where some are less severe than others. People can decide whether they want to be on that spectrum and label themselves as a person with a disability. On the other hand, we can’t necessarily take their word when they label themselves as living with a disability.

On the negative end of the spectrum are people who actually are looking for a handout by claiming to be disabled for circumstances that don’t limit their quality of life. They sometimes find clever ways to fit the legal definition of a disability, but they don’t represent the idea.

Q was wary of these people, which made him hesitant to accept the notion of depression as a disability.

“I feel there are few rights reserved for people with disabilities and they are terribly abused by those with many minor challenges,” he said.

Q mentioned a girl he knew in college who qualified for disability rights because she was allergic to bee stings. She received the same special dorm room he did.

“Like…really?!” he added.

Then we move into the low end of the spectrum where symptoms and limitations actually do affect quality of life. If I wanted to be on that spectrum, my depression would be on this low end, the manageable end. I can’t sleep as well as most people can and the sleep deprivation exacerbates some muscle stamina and functioning issues. It’s hard for me to work normal hours, but I manage. I go out and have fun. I have a girlfriend whom I love very much and our relationship is strong despite my limitations. My depression does inhibit how full my life is, but not significantly. Maybe we can assign me a “1” or “2” in severity on this scale.

Now let’s look at a hypothetical case for someone on the other end. This man permanently lost the use of his legs in a highly traumatic way. This caused him to develop a severe form of depression where he believes he can’t be happy because he can’t walk. The depression prevents him from working for many months. He drifts in and out of major depressive episodes.

He would be a lot higher, maybe a “9.” We’re now way past the point in the scale where the government should to provide benefits. It’s crude, but a good place to start.

These distinctions are important because the government, insurers, employers, friends, peers and family members need to understand how much support people need. They need to see how removed the reality is from assumptions we make when we see a person who doesn’t look like the stereotypical perception of a disability.

Q, Laurie, Kevin and myself fall on different points on this scale, but we all deserve compassion and freedom from accusations of looking for handouts or assumptions about how our lives must be. TC mark

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