After 23 years with these hands and arms, I have developed creative ways around obstacles. And yet, there are some obstacles I need help getting around. For example, I have trouble opening any type of bottle. I struggle when I’m cutting my own food. I cannot open a bag of chips unless I use my mouth. Like anyone with a disabling disease/syndrome, I need some help. However, I hate drawing attention to the fact that I need help. When I need help with simple tasks, I feel discouraged because my hands can’t do what I want them to do.
If you notice that I might need help, just ask! Here are some ways you can offer assistance and encourage me at the same time:
1. If you think I’m struggling with a task, try to relate to my struggle. You could relate to my struggle by saying something like, “I have a really tough time with [insert struggle here], too.” If you can’t relate to my particular struggle, you could tell me what task you sometimes struggle with. As you converse with me about what’s difficult for you, you’ll encourage me to remember that we all need help from time to time!
2. After you try to relate to my struggle, ask, “Would you like some help with that?” When you ask if I would like your help, you’re discretely offering assistance. I can then converse with you about whether or not I am able to get around the obstacle on my own. Sometimes I may look like I need help when I can actually complete the task on my own.
3. Even if your assistance is initially rejected, be willing to ask again if the person keeps struggling. I tend to struggle with a task for a few minutes before I accept help. My stubbornness is my best and worst quality.
4. Be willing to help someone with a disease/disability try to figure out a way around the obstacle. If they have the will to perform a task, try to help them find a way. I can tie my shoes, put my hair in a ponytail, write, and perform other difficult tasks because my parents encouraged me to find ways around the obstacles.
Each person with a disability or disabling syndrome will face distinct obstacles. You can’t always anticipate what someone might struggle with. If someone seems to be struggling, bravely offer your assistance. Speak kindly. Be an encourager.