Celebs with MS

Why Is Selma Blair So Important Right Now?

Why Is Selma Blair So Important Right Now?
Quick. Name three famous style icons with visible disabilities. 
Stumped? Me too. Is it because there are no trend-setting celebs with disabilities? Is it because people who look sick can’t be fashion role-models? Did you at least name Iris Apfel? 
Following last Sunday’s Vanity Fair Oscar party, I’m happy, relieved, and inspired to say I can now name at least one Hollywood fashionista who’s proving that Multiple Sclerosis and disability can be categorically beautiful. 
After going public with her MS diagnosis last October, actress Selma Blair has been peppering her Insta feed with pictures that include a cane. This is a BFD because we don’t typically see disability represented in LaLa Land, or in media in general, at least not in a positive light. Sure, we see villains and victims, heroes and monsters. Lazy tropes that are used to advance the stories of the main characters; stories that don’t really have anything to do with the real life experiences of people actually living with disability. 
Which is why Selma’s Oscars moment was such an important moment for disability visibility. 
As a society we’re conditioned to believe all kinds of negative stereotypes about disability. The words that are often associated with the chronically ill include things like weakness, burden, victim, sad, other. These messed up ideas about disability – and in particular mobility aids – had a lot to do with my own anxiety and shame over being seen with a cane when I’d first started to need one.  
And then Selma shows up at the VF party, winning the night with her Ralph & Russo gown and cape, proudly supported by the ultimate accessory, a custom, patent leather, pink-diamond studded, monogrammed cane by Asprey. 
Selma’s bad-ass cane was next level; that’s Hollywood. Maybe this degree of bling isn’t realistic or practical for everyone, but fashion is about fantasy, fashion is aspirational. And isn’t it wonderful for those of us in this community to have at least one fab example of the best of what disability can look like?
Of course, some of the tabloid media are still trying their best to spin this story into a tragedy. One headline screamed, “Selma Blair bursts into tears as she’s forced to walk with cane after MS diagnosis.” Fuck you, The Mirror. That is not how it went down. That stunner of a cane did nothing to diminish Selma. 
It empowered her. 
Selma herself described the moment as “indelibly marked in my heart”.
Furthermore, Selma outright rejects the notion of victimhood. “There’s no tragedy for me”, she told Vanity Fair. Open about the real struggle of living with MS, she doesn’t hide how hard it is, but more than that she doesn’t hide herself. This is a woman in the public eye, a working actress and mom, whom we, mere mortals with MS and other chronic illnesses, can look at and say, “Holy shit, that looks like me”. 
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The Extra Pressure On Celebrities With MS

Yesterday actress Jamie Lynn Sigler told the world she’s been living with multiple sclerosis for the past 15 years. The reaction from Trippers everywhere has been one of love and support. Already there are hopes she will represent us, give us a more prominent voice, be the face of this dreadful disease. It doesn’t hurt that the face we’re talking about has Hollywood good looks, a beautiful family, a successful career. Sigler paints a pretty good picture of what MS can look like. This misunderstood condition could use some glamorous attention, but more than that we all seemed to breathe a collective sigh of relief at how real she was going to be about her illness when she said, 

“Stairs? I can do them but they’re not the easiest. When I walk, I have to think about every single step, which is annoying and frustrating.” 

Because we’ve been disappointed in celebrity attention and how MS is portrayed in the media before. 

Sigler kept her diagnosis private for many years before revealing it on her own terms. When I was diagnosed, news traveled faster than I could handle. I was naive and didn’t realize how important it might have been to keep it to myself as long as possible. I didn’t understand the side order of stigma and labels that come with MS. It can, and will affect your professional opportunities. It changes relationships. You don’t get to control your own narrative. That whispering at the water cooler? No. It wasn’t about my awesome new bag. 

Facing my own ‘public’ has been and continues to be challenging. Like Sigler, you’d think I would have figured it out by now, but that’s just not the case. Of course Sigler’s public is enormous. Truly public. For the rest of us mere mortals the concerns about what and when to disclose are the same. How will this affect my work? What label will people give me? How will this change my relationships and potential relationships? How do I seek support without compromising privacy? How do I ask for help but maintain an appearance of strength and positivity? How do I balance living an open and truthful life with what that is going to cost me?

As brave as JLS is, we can’t expect this woman to be the ambassador for MS. It’s not her job to take on this tremendous task. She didn’t ask for this and we shouldn’t ask her to advocate either. I’m saddened to hear of her diagnosis. I’m grateful to see a public voice that resonates a little more closely to my own experience than what we’ve seen in the media before. To be able to say: 

It’s hard. Here’s what I’m doing about it. I’m still here. 

The MS community is inspired by Jamie-Lynn’s bravery in choosing to publicly share such a personal story. Just because she has a public platform doesn’t mean she is obliged to become the voice of MS. I hope society and her industry will create the kind of environment where she can continue to work and thrive as a whole person, advocating for MS on her own terms.

 As Sigler said, ‘It’s part of me, but it’s not who I am’. 

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