Wisdom In Unexpected Places

Last week, I got a piece of wisdom from a place that I did not expect at all – the Babysitter’s Club reboot on Netflix!

I should start out by saying that the reboot is just so good, all around. I read the books growing up, and they’ve done such a great job staying true to the characters and who they are while making it more modern and relevant now. Just like the books did, each episode tends to focus on one of the girls. In season one, Stacy’s big arc was about her coming to terms with her diabetes diagnosis; season two sees her feeling much more in control of her life and her health. Without spoiling the episode (because you should watch!), Stacy has to deal with a diabetic crisis, and talks to her doctor about how she’s feeling. The doctor shares some really great advice with Stacy that I want to share with all of you.

“Not being ashamed of your disease doesn’t mean that you have to love having it all the time. Sometimes, it sucks.”

WOW. Hearing that stated so plainly hit me hard – I actually rewound it so that I could take a video of the screen (you may have seen it in my Instagram story). This sentiment, and the distinction, is so important. Having a disability when you’re a teen or young adult can be difficult. It’s isolating, and you feel so different during a time when you desperately want to fit in and feel like everyone else. It took me the majority of my 33 years to get to a place where I feel comfortable with my disability – and that confidence still fluctuates sometimes.

But even now – when I’m comfortable acknowledging that I’m disabled, and that I’m not embarrassed by having SMA – that doesn’t mean that I always love it. Sometimes it’s the inaccessibility of the world around me – not being able to go somewhere because it’s not accessible, not being able to see the stage at a concert – but sometimes it’s SMA itself that sucks. Slowly losing your strength is hard. Knowing that you can’t shower or get dressed or use the bathroom without help can be frustrating. Not being in control of your own body can really just suck sometimes! Even though I’ve dealt with this for as long as I can remember, sometimes it just hits harder. There are just days where I feel super frustrated by the limits that SMA puts on me and what I’m able to do.

Years ago now, when I was dealing with extreme weight loss but hadn’t yet gotten my feeding tube, I had tickets to a Taylor Swift concert and was really looking forward to it. When I woke up that morning, my body would just not cooperate. I can’t even remember the specifics – the stress of knowing I needed to gain weight but not being able to was weighing on me heavily (pun intended) – but it just felt like nothing that day was going right. Something set me off, and I cried probably for over an hour. It was just the frustration of wanting really badly to go to something I had been looking forward to, and just feeling like my body was doing everything in it’s power to keep that from happening. It sounds silly, but that feeling of powerlessness can be so overwhelming. (I did make it to the concert and had a great time! But I’ll never forget what that day was like.)

But it can be hard to talk about those tough moments, because I know that people already have such a stereotypical view of what my life is like as a disabled person. There is still a real stigma, and I don’t want to add to that in any way. So it can be a challenge to find the right balance of sharing the reality without contributing to people’s stereotypical thoughts of my life as sad because I’m disabled.

Rationally, knowing that you can both not be ashamed of your disease or disability and still not love it all the time feels a little bit like a “no duh” statement. But when you’re grappling with the reality of those conflicting feelings, it’s a lot trickier! So seeing it put so bluntly on this episode was really meaningful to me. I’m so glad that young girls who are still coming to terms with acceptance, and understanding how their disease or disability fits into their identity, have this example. It’s so powerful to know that your feelings are valid and that you’re not alone! And the fact that the episode handled it in such a non-stigmatized way is so important for representation and acceptance – for both disabled and non-disabled people alike.

So thank you, Babysitter’s Club, for the wisdom, and for the hope I’m feeling for the younger generation.

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