Last week while I was working a normal shift in my local convenience store, I witnessed one of our regular customers speak to a new-hire at the register. Our new cashier was a young man, older than myself, but not by too much. He was very friendly, and stood tall, at least 6 feet and a few inches, with an awkward stance and a crooked smile. Both of his skinny legs were strapped with sturdy plastic braces, supporting his lanky body. I didn’t know him very well yet, but I could tell that he tried his best at whatever he could. Grabbing a carton of cigarettes for a customer, he slowly wobbled his way back to his position to continue the transaction. The line became long, and the woman who was next let out a long, disturbed sigh. I went over to the other register to shorten the line.
The next customer came over to me with a strained smirk on her face, and whispered to me “Why would you hire someone like that, especially at a busy store like this?” I stared at her, first unable to grasp what she meant by ‘someone like that’ and I just shrugged and smiled as I finished the transaction. It later occurred to me that she was regarding to my new coworker as someone less than a normal person, less than herself, and less than me. She considered him different, and unfit for the job. I was sad for him; how misunderstood he was in that moment. I was sad for him because his determination and kindness was overlooked, and will continue to be overlooked, just because he struggles in a way that is sadly unaccepted in our country. I was sad for him, and I was sad for everyone in America who faces the same struggles every day. Those who are unable to find jobs due to something out of their control. Those who are looked at with wide eyes, the silent judgement that always unleashes that little white elephant in the room. I was sad for those who made these judgements, with their rude and nosey stares, ignorant of the compassion and intelligence that disabled people have, how they are no different than anyone else. The memory of you became very poignant in my mind, and I was especially sad for you.
I think back to the days when I was a young girl, six, maybe seven years of age. I trotted along the side of your wheelchair, holding the hand of my twin sister. We raced to the entrance of the big Kmart store, and giggled as we waited for you. You drove up behind us, at your own pace, and told us to stop fooling around. I remember counting the stares of everyone as we walked in the store. I saw another girl my age, in the checkout line with her mom. She tugged at her mother’s pant leg, and asked loud enough for me to hear “Mommy, what’s wrong with that lady?” I looked around, wondering which lady she was referring to. I saw the fear in your eyes, the fear of people staring, the fear of people judging. I didn’t then realize it or understand your fear. To me you were the strongest person I knew, and growing up always seeing you in a wheelchair, I didn’t realize that it was abnormal. I now know how truly human you were, and how you held the same fear in your heart as everyone else does, the fear of being rejected. The same fear that I have, that my coworker has, even the customer to judge him. Although I know that the reality of your fears were much closer than it was for others. Unfortunately, this fear has not changed. I’d like to say that our world has become more accepting to those who are disabled, but no matter how much our society tries to sugar coat our differences, the pain, and force equality, there will always be a double-take, a second look, and a judging eye. You would have always lived with this fear.
It’s been three years now since you have died. I remember my father telling me, a few months after, that you probably would have lived if you had more money. You and dad divorced when I was young, so everything was only in your name. It was hard to sell your house, because you still owed the bank, and everything that was leftover still wasn’t enough. You couldn’t work, so we lived off of the disability benefits. Beneficial, they were in the least. I can recall the day when I was 14, almost 15, you spoke on the phone about getting hospice care at home, because it became very hard for my sister and me to take care of you alone. The agency had told you that it was “Need-based” and that you didn’t qualify. As if being bed-bound and 90% paralyzed didn’t prove your need enough. You were getting more sick with each passing day, and my friends started to question. They’d stare at me every day at school, knowing the heavy burden I carried on my back. The burden of caring for someone who was disabled, who was sick, who was dying. Someone who was different.
It never was different for me; it was simply my life. My world. My world that differed from every other student in my class, a world that they would never know. A world that they didn’t have to be burdened with. They could go on family vacations, driving up to the Poconos with their mother and father, they could go to the pool, and jump off the diving board together, splashing and having fun. They could go for quiet walks at night, holding their mothers hand, and not worrying about delivering her her nightly pills, just so that she could see another day. They could have a family, a normal family. They didn’t have to go home every day wondering if you’d be okay, if they’d have to dial 911 again. They didn’t have to balance their mother’s checkbook, and worry about funds. My family would never be, and truly never was normal. An outsider could tell you this, and I know you didn’t like to hear it. I never truly noticed it until now how apparent your body was, how it stuck out like a sore thumb, amongst everyone in the world. Our world was different. We didn’t want it to be, but it surely was.
I’d like to think of you as normal, and those like you normal. But those who struggle like we did, hardly ever go about it silently. It’s almost inevitable to stay silent. I can never pass talk shows or documentaries without seeing a “miracle story” about how a family lives with someone who is disabled. I think it’s how they combat the fear, how they stay sane. Those who are disabled still fall under the minority, and used to be considered mentally insane, possessed, or sinners because of what was wrong with them. Complicated limitations of the body or mind were not understood, and diseases like cancer used to be thought of as a curse by the devil. Obviously they are not caused by such, and extremes set aside, the respect for those who are disabled is lost and the disregard is apparent.
Historically, one might say that America has come a long way in this category of understanding, but I believe it truly is all the same. We may have become better at putting on a façade, in order not to “offend” someone, but the judgment remains. It always will. I fear for those being judged, as well as the judgmental. I fear for this country, as I feared for you. We are all people, but some are destined to be treated differently than others, so it seems.
All the understanding in the world could not have saved you. And it will not save others like you. I have come to know this as I have witnessed life deeper every day. The old woman will not be helped across the street, people will stand and stare. The handicap parking spots will be stolen by those who just want a closer spot, the boy growing up with an intellectual disability will be made fun of, and you, will always be my mother, but you could not help what happened to you. And it has changed my world into something so beautiful yet so unfortunate, something unique and something that I will never forget.