Disability is a difficult concept to embrace because it means something different to everyone. Is one disabled if they can’t walk? If they can’t see or hear? What about if they can’t work due to a medical condition?
First off, let me say that there is no right or wrong answer to any of these questions. I believe being disabled depends on the perspective and specific situation of the person in question.
Take Umber, for example. This young lady has endometriosis and is featured as part of the Identities Campaign. What does being disabled mean to her? Does this “label” of disability match up with what she believes a disability is? I’ve embedded the video so you can watch her journey….
In the video, Umber says, “Disabled is a word that I’ve kind of recently accepted as being part of my identity.” She speaks of how the disabilities she has aren’t visible. This is certainly a major truth of endometriosis. Yes, you can see her surgical scars on her stomach, but other things like pain and tiredness aren’t necessarily visible, nor are they considered a disability.
Yet endometriosis is a condition characterized by pain, pain that is often severe and incapacitating. Some women experience this horrific pain only during their menstrual cycle, while others are in pain nearly every second of every day. As Umber notes insightfully of her painful condition, “Your pain is part of your experience. It’s not something you can run away from.”
But is endometriosis really a disability? Am I considered disabled because I have endometriosis?
I was diagnosed with endometriosis in June 2014 after having a laparoscopic surgery to investigate the cause of my ongoing severe pelvic pain. By this point, I had been unknowingly suffering from endometriosis for 14 years. However, this surgery was unsuccessful in treating my endometriosis because of the type of surgery that was performed. While I waited months for a second opinion from a surgeon 700 miles away, I was nearly incapacitated with pain.
One part of my job description as a pediatric hospital pharmacist was to participate in medical rounds at the bedsides of patients, which could take anywhere from 1-3 hours depending on the census. This involved a lot of standing and running around to different units in the hospital. I was in so much pain due to my endometriosis that I was unable to perform this duty. So I spoke with our scheduler, who had no problem having me work a night shift position processing medication orders and checking drugs in the pharmacy satellite until I could get back on the floors after my surgery.
Two years later, the pelvic pain was back (ultimately for a different reason than endometriosis, but no one knew that at the time.) While I awaited yet another surgery, I informed my manager I wouldn’t be able to round until after the surgery because standing for so long was far too painful.
I was summoned to my manager’s office to receive some paperwork to fill out for my absence related to my upcoming surgery, which was still two months away at this point. However, we also had a conference call with our HR rep, who said I had to fill out ADA [Americans with Disabilities Act of 1990] paperwork since I claimed I wasn’t able to round.
Being told I needed to put ADA paperwork in place made me feel ashamed and angry. I wasn’t disabled! I was being forced to fill out disability paperwork just to be excused from doing a certain part of my job. They wouldn’t just take my word for it; they wanted proof from my doctor that I was in too much pain to stand for three hours. I hadn’t had to do it before; I was just not assigned to that position for a few months. But I sat in my boss’s office and sobbed as we discussed with HR that I had to fill out the paperwork. I felt like they didn’t believe me when I said I was in too much pain to do those duties.
In my mind, I refused to consider myself disabled. Part of this stemmed from the fact that my so-called disability was essentially invisible. I thought if anyone found out that I had the “audacity” to claim I was disabled, I would be labeled a hypochondriac. In Umber’s words, “Having an invisible disability can make you feel or appear selfish and that can be a really difficult thing to swallow and come to terms with.”
But I learned something through this process. I learned that the definition of disability is actually extremely broad. I didn’t identify as being disabled before this because my views of disability didn’t match up with what society says disability is. Or, to put it in Umber’s words, “How disability was presented to me throughout my life didn’t seem to fit with what I was experiencing.” I wasn’t able to do part of my job because of a medical condition, so I was put under ADA as protection so I couldn’t be discriminated against or fired for not being able to do that part of my job.
It’s taken me a long time, but I now accept the label of disabled. And I think that, when they are ready, women with endometriosis should accept the fact that for them, the condition may mean they are, in fact, disabled. There is a certain freedom in this realization. As Umber notes, “The internalized stigma is this massive barrier and once you start breaking it down, you can’t go back.”
*We have collaborated with the Identity Project (supported by Bathing Solutions) on this post*