And I miss it.
I miss it so much it hurts.
But I believe that I'll come back to it.
I miss you all.
|[The cover of Appearances shows a giant bookcase with a crack in it where light is coming into the darkness. There are also various personal items belonging to the characters hidden in the dark -- Oscar's chair, Sam's sweater, Shay's truck and Clancy's guitar.]|
|[Image: The cover of my eighth book, Windows, shows a blue sky and a wooden sign reading CAMP BRAVERY surrounded by children's handprints]|
|[Tonia, contemplating a remote, a DVD and a copy of Little Women]|
|[Getting boosted last Monday. You know I always need to flex.]|
What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)
Here’s one example of many: I went on a trip with my friends that involved a sailboat ride we had reserved and paid for in advance. When it was time for the sail, the captain said, “Okay! Getting into the boat will be the hardest part: All you have to do is get over this chain and then jump from the dock to the boat.” (Cue my ominous feelings!) The chain was very high, and then there was a space we’d have to jump over to get into the boat. Not a huge space, mind you, but if I missed (AND I WOULD MISS), I’d end up in the harbor. My friends and I all knew this task wasn’t feasible for me, but when I said, “I can’t do that,” the captain’s immediate response was, “It’s the only way on, so you have to.” At first, I think he assumed I was being needlessly difficult and entitled, because it took repeated insistences from my friends (“She literally can’t get on the boat.”) before he acquiesced, thought about it for about thirty seconds, and found a way to move his boat closer to the dock so at least I wouldn’t have to jump.
I’m not excusing his initial resistance, but I think nondisabled people sometimes struggle to grasp the realities that people with disabilities face. If a nondisabled person told someone to jump thirty feet high and the reply was, “I can’t,” there would be a mutual understanding that the request was unreasonable. But when a nondisabled person asks a disabled person to do something that tends to be easy for nondisabled people—say, taking independent steps or jumping a small distance between a dock and a boat—a genuine “I can’t” is often perceived as obstinance.
The other nuance that people sometimes miss is that our abilities can change from year to year, day to day, or even moment to moment. Just because I could do something easily last week doesn’t necessarily mean that I can easily do it today. Likewise, maybe something that used to be impossible for me is now possible. Many factors can play a role here, including environmental factors (temperature, crowds, accessibility of an area), physical factors (injuries, surgeries, illnesses, fatigue, growth spurts, aging), and even emotional factors (nervousness, excitement).
What risks or vulnerabilities exist in saying “I can’t” as a disabled person?
Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received?
What message was conveyed to you because of moments like this?
But the morning after our walk, my mom and I were in the kitchen together and the TV was on, and a news segment came on about an actor and dancer with CP named Gregg Mozgala. He said something along the lines of, “It’s hard to understand what having CP is like if you don’t have CP. It’s like having a body that doesn’t always listen.”
I didn’t even realize that my mom was paying attention to that segment too, but right after it ended she came over to me and said, “He just said the same thing that you told me yesterday. I’m sorry I got upset with you. I didn’t understand.”
I wanted to cry all over again. It was so validating to hear someone else with CP put words to my experiences, and it meant a lot to me that my mom apologized and reflected on our situation. I think sometimes it’s hard for parents, too—my mom is amazing, and I knew she only wanted to help me, but my difficulties were getting lost in translation because her body doesn’t move like mine. Our bodies speak different languages.
Have your experiences contributed to the way you set or struggle to set boundaries?
Anything more you’d like to add?
First, I just want to acknowledge that productive struggle is important; sometimes we all get frustrated and feel like giving up, and at times we need to push through these feelings and keep trying. Many of my proudest accomplishments were only possible because I persevered even when I wanted to stop, even when I thought, “I can’t, I can’t, I can’t.” And sometimes I did need a push from other people, including my parents. I’m NOT saying that parents should say, “Okay, never mind” whenever their child says, “I can’t.” In my opinion, they would be doing their child a disservice. My family believed in me and pressed me to be the best I could be, and that was a wonderful gift. Perseverance has taken me far in life, and that’s partly because I learned from a young age not to shy away from challenges.
But if your child says, “I can’t,” please don’t shut them down. Resist the urge to reply, “We don’t say those words.” In some situations, simply accept their response and move on.
Other situations might require more follow up. If they’re emotional, acknowledge the emotions they’re feeling (e.g., fear, frustration, sadness, anger), and help them name those emotions and identify why they might be feeling that way. It’s often incredibly difficult to admit that we can’t do something, especially when it’s a task we watch our peers do easily. And if they say “I can’t” in a defeated way, you can validate their feelings and then help them reframe their way of thinking with a qualifier: “I can’t do this yet,” or “I can’t do this right now,” or “I can’t do X, and that’s okay, but I’m really good at X, Y, and Z!” This reframing helps me sometimes when I feel down about something I’m not able to do because of my disability.
Then take steps to help them manage the situation. If your child is overwhelmed, they may just need a break, or they may need help breaking a large task into smaller, more manageable pieces. Depending on the situation and your child’s age and ability, you might also consider working together with them to find a way to adapt the activity so they can do it. If your child is able and willing to suggest adaptations, this can be an incredibly empowering process for them: It allows them to gain some control in a challenging situation, and it helps them develop creative coping skills that will serve them well throughout life. Also, a little bit of help (combined with patience and encouragement) can go a long way. Sometimes we just need more time and support to master a task, and it’s wonderful when others acknowledge that and give us the tools and space we need.
Encourage perseverance with positive reinforcement. Remind your child often that they are kind, smart, talented, and strong. Celebrate with them when they accomplish a goal they have been working toward. Make failure safe by encouraging them even when they struggle, and remind them that they learn and grow every time they try. When they persevere, lift them up with comments like, “I love how you kept trying and trying until you got it,” and “Wow! You worked so hard to do that. I know it wasn’t easy, but you did it! You are amazing,” and “You are such a hard worker!”
And encourage healthy boundary setting with positive reinforcement too. In some situations, that may even mean praising your child for saying “I can’t” and encouraging them to seek help when they need it. “I can’t” is not a universally negative statement. Boundary setting is essential for their physical and emotional safety and wellbeing, and it is a skill that will serve them well throughout their life.