Disability identity should not require an audition
Everyone has the right to define themselves as they choose
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Recently, I posed a question to Hemophilia News Today readers on social media for Disability Pride Month: “Do you consider hemophilia to be a disability? Yes, no, or somewhere in between?”
The question prompted a wide-ranging public discussion. Some considered hemophilia to be a disability because of its lasting effects and the support it requires. Others saw it as a medical condition that can cause disability without necessarily being one itself. Some said their answer depended on the individual and their access to treatment.
All of these experiences can be true.
When access shapes what is possible
Hemophilia does not create one universal experience. Someone who received effective treatment early may have opportunities that were unavailable to people born in another generation. Reliable access to prophylaxis may allow one person to remain active with few limitations, while another lives with permanent damage from bleeds that could not be treated adequately.
My family experiences this difference because we live in the Philippines. Factor VIII products are more widely available here than they were in the 1990s, but factor IX remains harder to obtain due to lower demand. The newer therapies discussed in international hemophilia spaces are not yet accessible to our family and remain out of reach for many Filipinos. Insurance does not reliably cover treatment, either.
This scarcity shapes the culture surrounding hemophilia. Families are often advised to be cautious: Protect your children. Avoid activities that might cause injury. Do not take unnecessary risks.
My husband, Jared, has severe hemophilia B and enjoys being active. We are grateful that his individual bleeding pattern has allowed him to participate in sports from a young age. Still, every conversation about whether he should push himself revolves around the same practical concern: If he gets hurt, will we have enough factor to treat the bleed? What’s the opportunity cost of recovery going to be? Would he still be able to fulfill his household and parenting duties?
Our choices are not based on courage, ability, or determination alone. The safety net matters.
Describing what hemophilia has allowed us to do is different from suggesting that someone else’s disability resulted from their attitude or choices. Personal success can show what is possible under certain circumstances, but it cannot tell us what everyone should have been able to overcome. Disability is not a failure of willpower.
At the same time, someone who does not identify as disabled should not be forced to claim the word. My husband lives with hemophilia and epilepsy, but his relationship with “disabled” is his own. Loving him and witnessing what these conditions have cost him do not give me the right to define him.
My own normal still includes disability
I have grown more comfortable identifying as disabled because of my attention-deficit/hyperactivity disorder (ADHD) and concurrent bipolar II disorder. Still, I do not spend most days consciously thinking of myself that way.
Most of the time, I simply feel normal — or, more accurately, like I am living my own normal.
I also recognize that ADHD contributes to many of my strengths. I can hyperfocus intensely when something matters to me. During an emergency, I am often the dependable one, anticipating problems and keeping everything from falling apart.
I become more aware of my disabilities when life demands what my brain finds difficult. I lose important items, forget spoken instructions, struggle with reports, or fail to manage time in the orderly way I wish I could.
Lately, I have realized that I may simply need more scaffolding than many people do. I pay for transcription services, calendar and note-taking subscriptions, memory aids, and systems that help my workflow run more smoothly. (Yes, even my expensive, produce-named ecosystem has become a disability aid!) I buy duplicates of essential items so I don’t stress over finding them at the last minute. I spend a significant chunk of my day tracking my energy so I know when it’s OK to push, and when it makes more sense to slow down.
I think of this as paying the ADHD tax upfront. I can invest in support now or pay later through lost time, missed information, unfinished work, emotional spirals, or even physical illness. Other people may not understand why I need so much infrastructure, but needing it does not erase my strengths. Neither do my strengths erase the ways I can be disabled.
Perhaps the same holds true in conversations about hemophilia. Someone can consider hemophilia a disability without declaring themselves incapable. Another can reject the identity without denying the condition’s seriousness. Neither should have to make their life an audition for the right to name their own experience.
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 consult your physician or another qualified healthcare 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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