I recently ventured to the movie theater to see one of this summer’s hit flicks, “The Barbie Movie.” There were numerous themes in the film that made statements about body image and stereotypes. I was pleased to see that there were “Barbie” characters with a disability, such as one with a prosthetic and another using a wheelchair.
There is, however, room for improvement as far as the frequency with which disabilities are represented in cinema. This is a reason why I can have a negative image of my body. If I don’t see myself, it might seem I don’t matter. Having a neuromuscular condition like Duchenne muscular dystrophy (DMD) has adversely impacted how I view my body in a variety of ways.
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An alarming piece of media to me has been airing on TV lately. It’s an advertisement for the continuous positive airway pressure (CPAP) alternative called “Inspire,” which is a device you have implanted. What’s problematic is that the ad appears to suggest this is an ideal product because you don’t have to wrestle around with a mask, rather than how efficient it might be.
Also, in the particular ad I’m discussing, there are 2 older women with binoculars watching an older man across the street throw his CPAP equipment to the curb. The woman comments how the man is looking more attractive now that he is no longer wearing the mask. I feel like this makes an insinuation that wearing a CPAP is an unappealing image. Then, I can internalize this as truth, and my body image suffers.
I’ve been taking the steroid medication prednisone since around 10 years of age. It’s among the main defenses in delaying the loss of muscle strength caused by DMD. A common side effect is having puberty stinted or close to being nonexistent. This made me look younger than I actually was, especially in my late teens. While society seems to say younger looks better, at this time in development, it can be detrimental to one’s psyche, I think. Throughout high school, I probably had the appearance of a 10-year-old student. I’d like to think that this didn’t really have an impact on how my peers viewed me, but I can’t completely shake the lingering thoughts that this was the case.
I started a regime of testosterone at 18 years of age in the form of a gel I still use, which is commonly prescribed to patients with DMD on steroids since it promotes bone growth that is lost when taking the medication. Another appeal can be that a patient can appear their true age due to things like facial hair. I’m satisfied that people in public don’t assume I’m younger as much. However, there seemed to be 1 drawback.
Naturally, with an increase in testosterone, sexual function follows suit. It didn’t really take me long to have such feelings. The problem is that I think others didn’t really realize this would happen. There’s a false stereotype that this won’t occur for most disabled people. So I didn’t know who I could talk to about it. Who wants to have this conversation with their parents?
Much of what I’ve learned about sex or sexuality has been attained from the Internet and cinema. This can have its benefits, but of course, these things can’t paint the most realistic picture. It helped me to talk to a therapist specializing in these topics, but it’s still a work in progress for me.
I have found a place where a more positive light can be shed on bodies like mine. That’s from social media influencers with similar conditions as me who share a perspective on various aspects of their body image. One of my favorites is Alex Dacy, aka “Wheelchair Rapunzel,” who has Spinal Muscular Atrophy (SMA). Her Instagram (@wheelchair_rapunzel) has just shy of 300k followers and discusses her opinions on body issues. A recent post was about the CPAP and its perceived relationship with attractiveness, as I mentioned earlier. She also has a website selling primarily clothing displaying positive language about disability and the body. I have a black T-shirt that says “Disabled Bodies Matter” on it.
The body can be a complicated topic for anyone if you think about it. I don’t really feel as alone when I have this in mind. Like the other adversaries I endure with DMD, I just try to do what I can to the best of my ability. That’s all you can ask.
