Caregiver Partners Need Support and Recognition, Too

Alliah Czarielle avatar

by Alliah Czarielle |

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I’m standing in line at a convenience store after my appointment at the salon. It’s almost lunchtime and my stomach is grumbling, as I left our condo without having eaten breakfast. My husband, Jared, who has hemophilia and a seizure disorder, had a series of seizures the day before (he’d missed one dose of meds, which happens) and needed to sleep in. My hungry self points to various types of food, and the cashier obediently rings them up. I rack up a large bill on snacks and fried treats.

My mind wanders back to the instances Jared and I would order food together. Each time, I would push an ID card toward the cashier. That little piece of plastic supposedly validates my husband’s social identity as a person with disability (PWD) here in the Philippines.

One of the perks of that ID card is a 20% discount on restaurant meals, but only a 5% discount on groceries and other necessities, plus discounts on a host of other things, including roofing and nails. I always found that odd, but then again, I have no idea who came up with the rules. I just can’t help but wonder if they have any personal experience with disability.

The provisions of Jared’s PWD ID seem preposterous to us at times: Do many persons with disability really order nails and farming equipment? (As a city dweller, maybe I just don’t know.) But the discounts are still helpful, no matter what. I do often wish I had one of my own to present to stores whenever I need to buy food or medication.

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If my own medication is too expensive, it will take away from our budget, which factors in my husband’s needs. And the food I buy is usually meant for my whole family, Jared included.

Sadly, I can’t just bring my husband’s PWD ID to establishments and claim that I am buying things for him. This is understandable, because businesses have their own rules and can’t give out discounts willy-nilly. Otherwise, they risk losing a huge chunk of their earnings. Some establishments are quite considerate and allow relatives to bring a letter signed by the PWD, along with the physical ID card. But this can be a hassle as well.

As a partner and a loved one, I can’t help but feel alienated from the benefits my PWD husband is entitled to, even if I am not immune to the hardships he experiences due to his chronic illnesses.

My husband is not defined by his health conditions. But the reality is that his illnesses do have an impact on multiple aspects of our family life — specifically, our movements, decisions, and finances. As a married man with a wife and daughter, Jared is not the only person affected by chronic illness. We live with it as a family.

Plus, from a spiritual perspective, Jared and I believe spouses are one in mind and body.

I pray for a time when partners and loved ones will be given equal support and recognition, especially when it comes to their needs. Having discounts is great, but we don’t need our own PWD IDs. Perhaps loosening up regulations to allow partners and relatives to benefit equally from “PWD perks” would be a great place to start. But more importantly, we need to acknowledge that there are loved ones helping and catering to people with disabilities. Their experiences and needs are valid, and their voices deserve to be heard.

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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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