Please Stop Sharing Unsolicited Advice
Having an invisible disability is bittersweet. At first glance, you appear “normal” or able-bodied, that is until someone has to see you perform a specific task that is affected by your disability. The “give-away” for me is reading small print and identifying people, places, and things that are more than about 10 feet away.
Tired of explaining
Up until I was about 11 years old, no one understood the complexities of my poor sight. Strangers, friends, and family thought the reason I was struggling to see was because I did not want to wear my glasses. I got tired of explaining to people that I saw the same with or without my glasses; literally all I could see during my routine eye exam was the big “E” on the vision board.
Fast forward, I am 29-years-old and people still say to me: “Why you looking so close, girl?” or “Why don’t you get some glasses?” or “You need some glasses!” Some people have even gone as far as to offer me their personal glasses. Yes, you read that correct – their personal glasses. I wish I was exaggerating, but I am not; these comments and actions have happened to me my entire life. No matter how many accommodations I put in place, I still have to attend to these remarks. I often wonder why people feel the need to offer unsolicited advice to strangers about the way they navigate through life. A part of me knows the nine out of ten times peoples’ intentions are to be helpful.
The impact of intentions
Regardless, recently I learned intent and impact are two different concepts. Intent is the way in which you are communicating and impact is how the person receives the information. It’s important to remember that we all receive information differently due to lived experiences. Therefore, it is important to think about the impact your intention might have on someone.
It's exhausting to hear
Please stop sharing unsolicited advice about how I should navigate through life. Sure, the intention of the advice might be coming from a good place. Sometimes, however, the impact is exhausting. Other times, I am curious about why people assume the reason I do not have glasses is because I do not want them. For all my fashionistas out there, let’s face it: glasses are currently super trendy. In fact, the thicker the frame the better! When glasses can literally be a statement accessory, why wouldn’t I not want to be cool and trendy? Then there are the times that whenever these comments are made, I really just want to shout at the top of my lungs that I am a Licensed Masters Social Worker who eliminates barriers to care for a living. As a result, I am well aware of resources and it is simply not a choice for me.
Pitied for my visual impairment
Also, please stop assuming that because I do not have the same sight as others that you need to feel pity for me. This is another example of intent versus impact. One of my pet peeves is receiving the response, “Oh, I am sorry to hear that,” in reaction to learning of my visual impairment. I am not always sure what the intention is with this comment, but the impact always feels like pity. Do you now feel pity for me because I have to view the word through a different lens? If so, is it because we live in a society that looks at individuals with disabilities as less than? I often laugh it off and say some variation of: “Don’t feel sorry for me. I am a dope human being who has accomplished so much in my 29-years of living!” While this might sound silly, the reality is I mean it!
What living with Stargardt's has taught me
I truly do believe so much of my success comes from the perseverance, creativity, and flexibility that living with Stargardt’s has taught me. I strongly believe that if I saw what other people saw, I would do what other people do. Therefore, the reason I am able to be such a powerhouse and empower people of all walks of life is because I see with my soul and my heart, not with my eyes... at least that the way eye see it.
Are you aware of assistive technology for AMD?