“Disability Burn-Out”: Internalized Ableism and its consequences!
By Raul Krauthausen, disability activist with OI

A disability can be stressful and sometimes trigger burnout. Often, one’s own internalized ableism plays a major role – in other words, the pressure of having to gain a raison d’être through performance and functionality. This can rule a lifetime.

It all started with a car accident. A crash out of nowhere, the great panic at the moment and then the realization that I had survived. But the “cure” is a tricky business, because it doesn’t happen by itself; it is hard work that at times makes me despair.

For several months I was forced to deal almost exclusively with my body and with myself. I’m regularly in hospitals, and the longer I’m in there, the more diagnoses I get: Quadruple leg fracture, sleep apnea, hearing loss.

I FEEL LIKE I’M IN A RABBIT HOLE

A branching tunnel that seems to have no end. I notice how I digress from the starting point of the broken leg and deal with more and more new diagnoses. What threatens me at the end of this cave passage? Disability burnout, a state of physical or emotional exhaustion caused and exacerbated partly by my disability and partly by my internalized ableism.

That’s not an unrealistic expectation. The warning signs are already there: I’m getting tired faster and faster. I notice this in my increasing difficulty concentrating or setting priorities. I can’t get going anymore and I’m moving in a downward spiral of disability, illness, exhaustion, inactivity and my own reproaches. So my condition is getting worse and worse.

My body is not so robust and resilient as a body without a disability

Two points play a particularly important role. My body and my mind. My body has a disability and because of this disability, the accident I experienced was life-threatening. I am light in weight and have fragile bones. The only reason I survived is because between the SUV and me was my wheelchair, which was hit first by the impact. But the consequences were far-reaching. My left leg was crushed and I lay in bed in great pain for weeks. My accident in November last year already had serious consequences. At that time, I fell down a high curb that was not well marked. Also, a life-threatening situation that “fortunately only” cost me the hearing in my right ear. My body is not so robust and resilient, like a body without a disability. And the additional ailments are slowly but surely piling up. They weaken me and wear me down.

My social value is linked to my performance and my functioning.

The other part of the equation is my mind, and part of that is my internalized ableism. As a disabled person, I have internalized that my social value is linked to my performance and my functioning. Disabilities are looked at as if they were something bad, as if we people with disabilities were a financial and emotional burden for the family, environment, and society. Even more we try to gain our raison d’être by performing, doing things on our own. We often function beyond our own limits to keep up with able-bodied people. We feel that we are constantly being put to the test and feel it is our duty to make our disability forget. This is physically and mentally exhausting for us and gives us another task.

In combination, these two aspects are downright fatal. Because the less my body can do, the heavier the ableistic pressure on my shoulders to function. I try ever more desperately to make up for my shortcomings and ever more resolutely ignore all warning signs as I march beyond my own limits.

I often wonder what to do. I am an ambitious person who likes to set goals. They used to inspire me, now I’m afraid of them. Because I know myself and I know the ableism in me. When I have a goal, I work even harder to achieve it. But I know deep down that the goal I’m approaching is not the result of my project. The word BURNOUT is written in big letters on the black and white tiled banner slowly but surely coming my way.

SO, MY HEALTH ISSUES, COUPLED WITH A TENDENCY TO OVERPLAY MY DIAGNOSES, COME AT A PRICE

In the article Why People Hide Their Disabilities in the Workplace, the authors of the Harvard Business Review brilliantly summarized the problem of burnout caused by hiding disabilities with the following introduction:

“If you hide a disability, everyday life (…) becomes a much heavier burden. They live in fear of being discovered. You work overtime to hide the real you.”

Necessary expenses quickly add up, and can lead to additional worries

People who hide their disability are two times more likely to be anxious and four times more likely to feel isolated. This contributes to overload and can tip the scales of burnout. There are also additional financial burdens. Many things such as PAs or mobility aids have to be paid for by disabled people themselves or at high cost. Even barrier-free living space is often hardly affordable. These hidden extra costs that a disability entails are known in the community as “crip tax”, “crip costs” or “crip time”. The necessary expenses quickly add up and can lead to additional worries. Especially when you live in constant fear of losing your job and no longer being able to afford everyday utensils.

Society inherently prejudices that we can hardly perform or do a good job.

It’s a game of hide and seek with no winner. You’ve built up the illusion of a level of performance that you can’t maintain without physical and/or mental cost. But it’s hard to backtrack, to uncover the masquerade and explain that in reality you have a disability, you’ve worked beyond your limits and now you can’t afford as much. Ableism is brutal and painful to endure. Society expects very little from people with disabilities. It inherently prejudices that we can hardly perform or do a good job. Of course, there is a great incentive for a disabled employee to refute these prejudices. You’re trying to prove to yourself that you’re good, is strong and energetic and makes a valuable contribution to the company. And if you then cave in and supposedly confirm the negative prejudice, it’s a devastating admission. Not only for self-respect, but also for reasons of solidarity with other disabled people. What if the company doesn’t hire more people with disabilities now in the future because I confirmed the negative image I was trying to disprove?

THE BURDEN ON THE SHOULDERS OF DISABLED WORKERS IS ENORMOUS

I would go so far as to say that every able-bodied person employed anywhere with a disability at the back of their minds has the fear of losing a good job because their condition deteriorates. The mess gets even worse when people with disabilities work part-time for low pay or are employed in workshops for disabled people. Being stuck in a job that doesn’t see you and in which you feel trapped with no alternatives and no opportunities to learn or advance can also create stress, which in turn can lead to burnout.

Constantly “asking for help” is also corrosive and can contribute to burnout. I find that I ask less for help when I’m not feeling well. Ultimately, however, this makes me feel even more helpless and my self-confidence drops, which in turn can lead to a flare-up of my imposter syndrome: a feeling of massive self-doubt about one’s own performance. This “reliance burnout” can cause people with disabilities to feel that they are unable to cope with the demands of their jobs or daily life activities.

THE WAY OUT OF THIS DILEMMA IS ACTUALLY CLEAR:
CONSISTENT ANTI-ABLEISM

But it is heavy. It means radical acceptance of what is – physically and mentally. Thus, it forces you to see, draw and hold your own limits. It’s about protecting yourself from the ableist idea that self-worth is tied to achievement. And it demands openness – language. For a large part of internalized ableism is shame. And shame grows in the unspoken, and only goes away when we find words for it. It’s hard work, but it’s definitely worth it.

Because as long as I go full throttle, I never find that I can reach my destination at a slower pace. And as long as I’m fighting the reality that I need help, asking for something will be a struggle every time.

I think a first step is to heed an old adage:
“The perfect is the enemy of the good.”
(Voltaire)

By not recognizing the good as enough and always wanting to achieve more, I burn out in the sprint in the last few meters between good and perfect.

I’d like to find out what happens when I stop wasting all my energy working off my internalized ableism. It’s annoying. It wants to make me believe that I’m only worth something if I achieve things or manage them on my own. I don’t have the answer yet. But I guess I would then have more time and space for things that not only draw energy, but also give it back.

And there are a few things that would come to mind: Spend more time with friends or my partner, eat well, sleep well, watch a movie, go for walks. Wouldn’t it be nice to find out?