Examining Workplace Expectations for People With Disabilities

Alliah Czarielle avatar

by Alliah Czarielle |

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I recently came across the idea that people with disabilities (PWDs) should be held to the same standards as everyone else in terms of productivity and output. As a PWD and an entrepreneur, I wanted to understand the thinking behind this.

In a social paradigm that upholds fairness as one of its foremost values, it makes sense to expect PWDs to work at the same capacity as others. After all, assuming that PWDs aren’t on par with nondisabled people is discriminatory and arguably ableist. But while equal output is a reasonable goal, we must first understand the process by which this can be achieved, and then ask if it’s realistic.

My husband, Jared, also is a PWD and an entrepreneur. He has severe hemophilia B and a seizure disorder, while I was diagnosed with attention-deficit/hyperactivity disorder and bipolar II disorder. These conditions inevitably affect our ability to work, despite our best efforts to consistently deliver excellent output.

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I’ve always been an advocate of redefining productivity for people with disabilities and chronic illness. Though many PWDs want to meet or exceed expectations at work, their reality often makes achieving this goal difficult. It makes sense that expectations should be adjusted regarding what a person can realistically deliver.

Often, a PWD’s output at work varies depending on their symptoms’ severity. During a chronic illness flare-up, such as a major bleed or an anxiety attack, it can be physically challenging to produce any amount of work.

As I write this, Jared is struggling with an unexpected hip bleed following a seizure. Thankfully, we were able to infuse factor before it was too bad. Nevertheless, he continues to struggle with pain and limited movement. Despite being injured, he still works and attends meetings from his bed. But the pain is a distraction. If he didn’t have access to factor, it would take him much longer to recover, and he’d be in agony, unable to work at all.

The Philippines, where we live, has come a long way in recent years in terms of factor availability, but we still lag behind developed nations in terms of our current treatment standards and accessibility of factor. In the 1990s, when Jared was growing up, blood-derived products were still the standard form of hemophilia treatment. He would need to be hospitalized for at least two weeks. As a result, he missed a lot of classes and school activities due to inevitable bleeds.

For many PWDs, the lack of access to medication can serve as a major hindrance to attaining an optimal level of wellness that allows them to work. This is especially true in developing nations, where medication may be either unavailable or too expensive to afford on a typical income.

According to Jared’s hemophilia A peers, factor VIII costs about $100 a vial here, which is almost the equivalent of a minimum-wage worker’s monthly salary. Meanwhile, factor IX, for hemophilia B, is only available through donations from other countries. Financial help from institutions, particularly the government, can help ease the burden of obtaining medication, but realistically speaking, it’s not always available.

There’s also the question of whether emotional support is available to PWDs, who are particularly vulnerable to mental health issues. Their struggles with chronic physical pain, the sense of missing out on key life experiences, and generally feeling misunderstood can cause depression and anxiety, which in turn cause low motivation and difficulty working.

I believe that without the right support, it’s difficult or even impossible for a PWD to meet the accepted standard of work that’s often required. We need to go beyond equality and aim for equity. To do so, we must recognize that people come from different places in life. Less privileged individuals may require additional support to perform at the same level as those who have more opportunities and advantages. But until that support is available, we must first learn to set our expectations accordingly.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.


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