A Carer’s Experience of ‘Invisible Disability’ Discrimination

Alliah Czarielle avatar

by Alliah Czarielle |

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It’s almost 11 in the morning. My husband Jared and I are lined up at the mall-based satellite branch of our national health insurance system. By now, the mall has been open just less than an hour, but there must be a hundred or so people already, impatiently awaiting their turn.

When my turn finally comes, I walk up to the front desk, situating myself at the priority counter. I tell the clerk on duty that I want to avail of a new membership. She looks at me with an intense blank stare, studies me — my face, my physique — and asks if I am pregnant. There is a sign in front stating in huge bold letters that only people with disabilities, senior citizens, and visibly pregnant women are allowed. The words stare back at me bitingly: “Visibly pregnant.” I’m 15 weeks along, but still no sign of a baby bump. (Even now, a week since the incident, my stomach remains small. But know my baby is there, I can tell by the flutters in my belly and the strain I feel when my uterus stretches out. But to others, this is barely obvious.)

Thankfully, the clerk believes me. She does, however, say that I need to go to a local health insurance office because the satellite branch is not allowed to process pregnant women’s applications. She also tells me to bring my ultrasound pictures when I apply at the local health insurance office.

There were so many thoughts I wanted to share with Jared after that. Suddenly, I was filled with a new sense of empathy for him and his experiences as a person with disabilities; invisible disabilitiesfor that matter. I’d bet if an ordinary person saw him walking on the street, they’d never once think that he was different. Hemophilia is not a showy disease, especially if you are physically active and fortunate to have access to medication and other forms of support. The ones who are less fortunate are sometimes seen on crutches, and some may even be wheelchair-bound due to permanent joint damage. Jared is lucky in this regard. However, because of this, his condition is not as easily recognized and benefits are not as easily granted.

In addition to hemophilia, Jared also acquired epilepsy due to a cranial bleed he’d sustained as a child. Much like hemophilia, epilepsy is invisible. Unless he has a major seizure in the middle of a public place, strangers don’t know he has it. Most times, his seizures are relatively mild, his loss of consciousness akin to fainting. Curious bystanders often stop and ask what’s going on with him, wondering if he’s tired or having difficulty breathing. Some even approach him and give him various oils and tinctures to sniff in an innocent attempt to help. I usually have to explain what it means to have epilepsy — everything’s all right, no need to take him to the hospital, he will be just fine once the seizure subsides.

Jared plays it safe and doesn’t go out alone. He needs to have a constant companion no matter where he goes. Sometimes he can’t help but compare himself with other adults and the freedoms they enjoy. Although he does have freedom of choice, he must choose wisely, and sometimes the option that is reasonably better in the long run just happens to be the more restrictive one. I know for sure that life restrictions are not easy to handle. I have always identified as a free spirit, fighting for the things I believe in and eschewing restrictive practices and traditions.

Many people still don’t understand that disability is so much more than the physical limitations it causes. What we often don’t see are the emotional hardships — the feeling of powerlessness in making choices that matter to one’s mental health and being forced to choose physical safety over personal growth, especially in young adulthood — a crucial time of one’s life wherein a person is supposed to spread their wings and gather life experiences. And of course, another hardship is the feeling of being trapped in a state in which one has no control, as Jared tends to feel about his seizures. Receiving criticism and judgment from others, and from the whole social system, for not “looking sick” does not help people with disabilities at all. In fact, it only worsens how they see themselves.

When I headed straight for the priority line despite not looking pregnant, I couldn’t help but feel like a liar. I knew deep in my heart that I wasn’t cheating, but I still couldn’t shake off the thought that others probably viewed me as a nuisance. In reality, I was only applying for the sake of the benefits I would need once I give birth. I am not a rich lady, just a typical working class millennial married to a person with disabilities.

In the end, I didn’t get to avail of a membership. The office explained to me that even if I did apply, I would still not qualify for childbirth benefits on my due date due to insufficient deposits. The best option would be to have Jared sign me up as a dependent, which means he, a person with disabilities, would get credits deducted from his insurance, so I could afford to give birth. Not the best option, but that’s for a different story.


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 Services, and are intended to spark discussion about issues pertaining to hemophilia.


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