Communication and empathy are important for disability advocates
If we expect kindness, we must approach others with kindness as well
As the carer of my husband, Jared, who has hemophilia B and a seizure disorder, I’ve realized the importance of communication, understanding, and empathy. Focusing on these values helps us mature in our roles while balancing personal challenges, which for me include being a caregiver, mother, and a person with attention-deficit/hyperactivity disorder (ADHD), and for Jared, being a chronically ill person and a father.
Living with a disability means navigating tricky situations. Plans may change, and we may require special help or accommodations. Acknowledging this need helps us build and maintain relationships while embracing our own challenges.
Our illnesses aren’t our fault, but how we respond to challenges is our choice. Seeking reasonable help bridges the gap between our needs and other people’s capabilities.
Other people’s expectations
Everyone faces limits and personal struggles, but other people might not be aware of our conditions and challenges. Additionally, not everyone will acknowledge our needs. That’s simply a reality. Maturity involves understanding that we can’t change everything, including other people’s perspectives. Being a kind and empowered person with a disability means we’re able to advocate for our needs without ignoring the rights of others.
A recent social media post that caught my attention involved an issue between a mental health advocate and an online store. It began with a minor misunderstanding about a store-hosted game and a certain free item. The advocate seemed to start the disagreement, causing a frustrated store owner to drop their professional demeanor because of the escalating tension.
As the interaction heated up, onlookers mentioned the advocate’s publicized status as a person with disability. Speculation arose that the disability might have added fuel to the fire. Some suggested that the advocate might need treatment. As expected, these comments resulted in hurt feelings and retaliation.
In sharing this incident, I’m not judging who was right or wrong. I merely mention it to emphasize the significance of attempting to comprehend other people’s perspectives before we speak or take action. Had both sides communicated empathically and owned up to their respective errors, the problem might have been resolved more smoothly.
Self-awareness is important
Having mental health conditions myself, I acknowledge that they sometimes affect others. My ADHD leads to oversights and schedule disruptions. Similarly, Jared’s hemophilia and seizures influence his behavior. Pain from a bleed might make him lash out at his caregivers, including me. Back when he was taking an unsuitable type of seizure medication, he struggled to control his emotions and was prone to angry outbursts.
Mindfulness and therapy enhance self-awareness, which helps us manage our negative emotions. It’s a work in progress for both of us, but then again, everybody has to start somewhere. Increased self-awareness reduces unintentional harm and fosters positive relationships. Good connections matter, as we never know when we might need assistance or have to step up for others.
A key truth we’ve learned
Everyone deserves kindness and understanding, regardless of whether they have a disability. Having a condition isn’t a valid reason to mistreat others or cause them pain. If we expect kindness, we must approach others with kindness as well.
Seeking help is OK — we can see it as an opportunity to grow. After all, our illnesses don’t define us, but our responses do. Instead of responding to other people’s lack of understanding with anger or spite, we can learn to become kind advocates, attempt to see where others are coming from, and meet them halfway.
Patience isn’t guaranteed, as other people have limits, too. Understanding and empathy are a two-way street. We’re part of a greater community where our effort and energy affect others. We must learn reason, respect limits, and grow through mutual support.
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.