Advocating for Someone Means Accepting Their Imperfections
Advocacy is a beautiful thing. Many people find it fulfilling because it’s a way to show kindness to others while championing something close to one’s own heart.
But advocacy isn’t always easy. I’ve come across some disability advocates whose dedication to the cause was tested by their experiences interacting with disabled peers.
Most of the disabled people I know — my husband included — are kind and considerate. They possess a remarkable amount of patience when faced with challenging situations. But just like every other human, they may also have character weaknesses or just weak moments.
For a person with disability (PWD), the reality is that their condition likely affects every aspect of their life. Chronic pain may render them incapable of things that society views as “basic,” such as showing up for work or going out whenever they want to. They may not even be able to communicate effectively with others when they aren’t in the right mental space. They may experience mental breakdowns. Simply put, they may be unable to meet societal standards all the time. As a result, other people might label them “flaky,” “unreliable,” “irresponsible,” or worse.
I’ve experienced this while working on the front lines of a PWD-run store. My husband and I are open about our lives and experiences as people with chronic and mental illness trying to run a business in a world that can be ruthless and unfriendly. We hope that openly branding ourselves as a PWD-run store will raise awareness about chronic illness and disability. We want to encourage people to be kind to their PWD friends because their lives are harder than they appear. Sadly, we don’t always achieve our objectives.
My husband has hemophilia and gets random bleeds, which can sometimes render him bedridden. Regardless of the severity of the injury, it still affects the way he lives and works. Pain can also make him depressed, and the best pain medication isn’t always accessible. There are days when he wants to show up for work, but just can’t.
Meanwhile, I am diagnosed with chronic depression and anxiety, which I’m actively battling in the best ways I can. Admittedly, I believe I could deal with my mental state better if I were more financially secure. But at this point, I’m not wealthy, and I can’t prioritize going to a psychiatrist because it’s too expensive for the average Filipino citizen. I need to think about food, rent, bills, my child, and other basic needs first. Besides, given that my husband also has a seizure disorder, which may actually put his life at risk, I know he needs psychotherapy more than I do.
The Philippines is not an inclusive society — we’re just not there yet. Widespread poverty causes the needs of PWDs to be pushed down the priority list. With this heavy burden on our government, it would be nice to see ordinary citizens move to support fellow citizens in need — as we did during the height of the COVID-19 pandemic by establishing community pantries.
Advocating for the chronic illness and disability community is not as simple as posting a Facebook status. It is a huge responsibility. Advocates must be willing to look beyond themselves and acknowledge their limited perspective to truly see the hows and whys of other people’s lives. When we advocate for disabled people, we must accept that they are imperfect — but we can still include them in our world.
Since the beginning of my marriage, I’ve accepted that Jared simply cannot do some things, and that there are certain areas of life where he needs my support. He’s learning the same thing about himself — sometimes the hard way. While it’s not easy to accept that you aren’t invincible, it’s a necessary part of learning to live as a responsible adult.
As the wife of a person with chronic illnesses, and a member of the mental illness community, I can confidently say that there is nothing inherently wrong with PWDs as a group. Most individual PWDs I know personally try hard, but they don’t get the same opportunities as healthy people who are just as accomplished. That can feel discouraging.
Sure, PWDs aren’t perfect, but what human being is? We all have our strengths and weaknesses. And it can be problematic when we only see another’s weaknesses without trying to understand them on a deeper level.
Perhaps the main problem is that we live in an ableist society. But society is composed of individuals. If we think society is flawed, it may be time to look deeper within ourselves and examine the ways we might be contributing to the issue.
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.