We sang along to In Your Eyes by Peter Gabriel, and had a few hours to kill before the party. So, we hung out at Mom and Dad’s cabin a few miles away from our aunt and uncle’s. My brother picked wild raspberries and brought them back for us to try. He took pictures of Mom’s flowers in front of the cabin for me, since I could not balance and use my camera with my crutches. Mom even took Tara and me for a ride on the UTV to see all the land around the cabin. Mom was great, giving me a heads-up about where the ground slanted and giving me explicit directions when we walked anywhere. When she began pushing my chair outside due to the terrain, she paused and said, “I’m sorry. Is this okay?” Small things, to most, but to me they felt huge, and made my navigating that much easier.
When we arrived for the party, my aunt was completely surprised - a success - and she had a yard full of friends to visit with. Some had known Tara and me when we were babies and remembered Tara accompanying our aunt and uncle to visit them while I was still hospitalized as an infant.
As with every time I traveled, I had to think of accessibility. I had brought my wheelchair for this venture, because I knew the cabin could accommodate it. It turned out, though, that the party was held out back and Mom suggested using the chair outdoors and my crutches indoors as there was a giant deck stair to surmount with no railing on the way into the cabin. My cousin was fabulous about lifting me up the step as needed.
I had been seated at the end of a picnic table with my sister, brother, Mom and Grandma. Eventually, I noticed Tara wasn’t there anymore. I also had not gotten a chance to visit with my aunt. I thought they must be inside the cabin, and set out to push myself through the grass to the giant step. On the way, I figured I should use the restroom.
I was on the lookout for my cousin, when I spotted Tara and my Grandma on their way out the back door, carrying three plates of food between the two of them.
“I was just looking for you!” I said to Tara, feeling relieved.
“We were getting food for all of us,” she answered.
I was surprised. They hadn’t mentioned going inside to get food, and thus, I had not asked them to bring me anything. However, both knew that the idea of me managing a flimsy paper plate laden with food while using my crutches was impossible. So, they had thought ahead, considering me.
|[Image is: Me smiling and pointing to a raspberry jam bar I am about to sample.]|
“Oh!” I said. “Thank you!”
From beside me, a woman spoke up - one of my aunt’s guests - but a stranger to me:
“Oh!!!! They brought you some food! That’s so nice! That’s so nice of them, isn’t it?”
I couldn't respond. By now, I was too busy concentrating on navigating the step with my cousin’s help. Still, her remark stayed with me.
As a disabled woman, I hear comments like hers all the time. While my family does not push me to go above and beyond in expressing my gratitude and accepts my “thank you” as legitimate and sufficient, it’s the random witnesses who urge me over and over to consider just how nice they are being.
But is it nice?
Really think about that.
Is it nice to bring someone food who cannot access it themselves?
Is it nice to fulfill someone’s basic human need?
In the days following, I experienced the effects of this woman’s words. I felt emotionally raw and degraded.
Now why not focus on all the great ways my family and others were there for me? Why give that one comment time and energy?
Well, the truth is, I tried very hard not to. I did reflect on all the ways my family helped me, and told them how much difference it made for me. I knew this one woman was spouting nonsense.
I was grateful.
I had said thank you already.
I didn’t even know her.
However, when these comments recur, they become more and more difficult to ignore. Remember, I am sharing a single example, but this is something that happens to me often.
So, even though I know it was a ridiculous comment, my inner-voice started second-guessing the situation:
Well, they didn’t really have to bring me food… I had snacks with me. I would have been okay without. It’s not like I would have starved. Missing one meal wouldn’t kill me.
Did I make it super clear how much I appreciated that they thought of me and brought me food, even when I didn’t ask? That was above and beyond…
Am I ungrateful?
These thoughts can erode a person’s sense of dignity. I am lucky to be surrounded by family and friends that can push back against those doubts with me. People who can echo my own feelings, having experienced them too, and reassure me that the woman in question was out of line.
So, you’re out and about, and you witness someone helping a disabled person. You want to comment, take a video, or start an internet meme that draws attention to the helper for going above and beyond.
Before you do any of those things, though, I would urge you to pause and consider.
Instead of identifying solely with the person helping, try to put yourself in the position of the one being helped. If you had your hands full, and were so weighed down with grocery bags that you needed a hand getting them to your car, would you want a passerby commenting that your husband or your wife was going above and beyond by help you? What if that person would not let go of the small act of kindness and kept harping on it, letting you know that your level of gratefulness was not sufficient. Because helping you is a big deal. Because you are you. And because anyone who goes out of their way to give you a hand is a saint.
How would that feel?
Uncomfortable, right? Maybe a little bit gross? And probably entirely unnecessary. You’re an adult. You don’t need a nosy passerby to prompt you to express your thankfulness in the way they think you should.
Know that those of us with disabilities are painfully aware of each and every time we are helped. We know it isn’t always easy on those who love us to assist us in the ways we need. Because of that, we definitely appreciate help when it’s given. Every time it’s given.
We help each other in my family (disabled or not) because it is what family does. While I need help more frequently than the average adult, I also give help. I have gifts and talents and time that I give to family and friends. Yet no one calls me exceptional for that.
My need for help, though, is viewed as exceptional. My needs are referred to as “special.” While the term “special needs” can denote a need for accommodations (particularly in a school setting), it also insinuates that my basic needs are unreasonable. So anyone who assists me with those needs is seen as amazing. Meanwhile, when nondisabled people receive help with daily tasks, it is viewed as simply lending a hand. Amythest Schaber says: “Disabled people don’t have special needs. We have very reasonable human needs...The need for accommodation isn’t a ‘special need. It’s a basic human right.”
I am fully human, and as such, my need for help is fully reasonable. Pushing me (or any other disabled person) to be overly grateful for the fulfillment of our basic needs implies a fundamental lack of respect for disabled lives.
Let my gratefulness be sufficient, just as yours is.
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