Is "Inspiring" A Bad Word When It Comes To My Daughter?

In the world of disabilities, the word inspiring can be quite controversial because many people with disabilities have negative associations with it. Often, these people object to portrayals that only focus on how disabled people overcome adversity and “inspire” others with their accomplishments and/or cheerful attitudes. In my family we regularly receive compliments that include this word, so I have developed my own set of beliefs centered around it.

My six-year-old daughter, JJ, has Rett Syndrome—a rare progressive disorder that has taken away her ability to speak, walk independently, feed herself, and use her hands. JJ can use her eye-gaze device quite well but is still not skilled enough—or old enough—to have in-depth views on the subject of inspiration. So, in this post I will limit myself to my own views and the things she has expressly told me using her device.

My feelings about the word inspiring often depend on what it is describing. For me, it doesn’t feel necessary when my family is merely keeping up with everyone else. For instance, JJ often has goals that are similar to her typical peers; she just requires an altered path to attain them. At school JJ sees her classmates color pictures and has asked for the ability to do so as well. She wants to be able to create her pictures using her eye-gaze device, which she controls much better than her hands. But the goal—a vibrant, creative picture of her own making—is something she has in common with many other six-year-olds.

I also have times when my goals align with parents of typically developing children. Like them, I want my daughter to be safe, fed, healthy, educated, rested, and entertained. As is the case for JJ, it just requires more work. For example, I don’t boil up a pot of macaroni and cheese for her lunch. Instead, I blend up brown rice, broccoli, chicken, blueberries, and milk and put it through her feeding tube. I don’t find a babysitter for date night. Instead, I train, schedule, and manage a team of six in-home helpers hired through Medicaid. I don’t take her to a yearly well-child visit. Instead, I juggle appointments with a slew of healthcare specialists and administer a dozen daily medications. But in my opinion, I’m not doing anything truly “extra” here. I’m just a mother doing what needs to be done for her child.

For me, inspiration often lies elsewhere—in a place located well beyond daily tasks and chores. I find it most inspiring when people move past necessity and do things they want to do, feel are important, or benefit others. Sometimes, I even include myself in this category.

For the past two-and-a-half years I have written about disability parenting. I spend a good amount of time brainstorming topics for my blog, writing and polishing essays, and meeting with my weekly writing group. I also submit my pieces to a wide variety of venues and contests, so I can continue to add to my list of publications. Once a year I run an online fundraiser through my blog and raise money for Rett Syndrome research.

No one would fault me if I didn’t do these things. I could operate only as JJ’s mother—a full-time job in itself—and my family and friends would still be proud of me. But I write because I am driven to, because it is important to me, and because I feel like it makes a difference. These are accomplishments I am proud of, and I hope that they inspire some of the people who come across them.

Many other disability parents go above and beyond their daily caregiving routines as well. They write books, produce podcasts, create non-profits, build equipment, raise money, and advocate for better resources for their loved ones. These parents do not have to do these things and are often not paid for them. They simply want to create real change in the world for their child and people like them.

Seen in this light, JJ herself is quite inspiring. She also has goals that go beyond keeping up with her peers. For example, she used her device to tell me she wanted to learn German over the summer. So, for the next three months she watched German videos, listened to me speak to her in German, and explored the German vocabulary system on her device. She can now understand many conversational phrases and answer yes/no questions about her entertainment and clothing preferences.

That same summer JJ also expressed a desire to write a poem and enter it into a national poetry contest. Again, it required lots of hard work to get there. First, she watched a series of YouTube videos to learn about creating poetry. Then she answered several yes/no questions to narrow down the topic and structure of the poem she was envisioning. Finally, she went line by line, creating the poem using her device. The result was a nineteen-line poem that was chosen for publication in the contest’s anthology.

JJ’s poem and her language lessons were not necessary to her survival or daily functioning. They were also not activities she saw her peers doing. They were extra things she felt driven to do, even if they were difficult and time-consuming. If that's not inspiring, I don't know what is.

Just as I love sharing my writing with my readers, JJ enjoys sharing what she has written, created, and accomplished with others. And while it is wonderful for people in the typical world to learn about what my daughter can do, I believe that is not the most important outcome.

Instead, I am most excited about the ways in which JJ might inspire other people with disabilities to go above and beyond. Often, accomplishments like hers create a cycle that can build on itself in the best of ways. In fact, JJ wouldn’t have believed in herself and her own abilities if she hadn’t seen older girls with her syndrome do things like write books or create artwork using their devices.

My goal in this post isn’t to discourage anyone from using the word inspiring or from sharing heartfelt thoughts with me or my daughter. I just want to bring to light the truth that most people with disabilities—and many caregivers—have complicated thoughts and feelings about the word. My hope is that by sharing my own ideas and experiences, I have “inspired” you to explore what it means to you.

In what circumstances have people used this word to refer to you or your loved one? What was your reaction? Let me know in the comments below.