If you follow pop culture at all, you’ve probably seen recent coverage about Selma Blair, an actress diagnosed with Multiple Sclerosis (MS) who attended the Oscars with her cane. While Blair has said some important things, much of the media coverage surrounding her diagnosis and public use of an assistive device has done a disservice to many of us in the disability and chronic illness communities.
I want to be very clear that none of this is the fault of Blair herself. As someone with chronic illnesses that seem to be progressive (though unlike Blair, I have not had access to the diagnostic services for anyone to be entirely sure what is going on), I really appreciate her talking about living with MS and relate strongly to many parts of her experience.
However, the media coverage and what interviewers have seemed to focus on the same old disability tropes of: inspiration porn, being lauded for being a “good sick person,” and using atypical examples to generalize about what it is like to be disabled.
Inspiration Porn and “Bravery”
Disabled people do amazing things every day. We take care of people and do art and start campaigns and survive abuse. However, something doesn’t become “brave” or inspiring” just because a disabled person does it. Selma Blair going to the Oscars is not brave. Selma Blair living her life is not inspiring. These attempts to frame disabled people as courageous is such a common problem for disabled people that the late disability activist Stella Young popularized the term “inspiration porn” to describe it.*
You can see the inspiration porn dripping from headlines about Blair. E! News’s headline reads: “Selma Blair’s Brave Battle With Multiple Sclerosis Has Changed Her.” It was indeed very brave of Blair to talk openly about her disabilities, but it is not brave of her to exist as a sick person. (Except sick people don’t live, we “battle.”) KQED calls Blair’s bravery “awe inspiring.” (Once again, her look was awe inspiring, but her “bravery” in attending an important professional event? Not so much.)
Sometimes when people find out about my illnesses they compliment me on how “amazing” it is that I did stuff like finish law school and have kids. There are definitely remarkable parts of those experiences, but just because we’re disabled doesn’t mean the bar needs to get lowered for us (except when we literally physically need a bar lowered for us). Since I have the privilege of my disabilities usually being unseen by most people, I’m not subjected to as much of this as my visibly disabled friends. We know that people are trying to be complimentary, but it’s incredibly patronizing and can be actively harmful for disabled people.
“Good Sick Person”
When you are disabled in ways that are not visible to most people, there are certain rules. Well, not so much rules as catch-22s. If you do anything, people say, “you must not really be that sick.” If you don’t do anything, people say “you would feel better if you did something.” All activity is simultaneously too much and too little.
Disabled people are always supposed to have a good attitude about stuff. We can’t be angry about the way doctors treat us or depressed about the ableism we have to face. In the Vanity Fair article about Blair, the author talks about how the relief Blair finally felt when she was diagnosed, and then, “there were 10 minutes of tears. Then she had to get back to business.” The subtext is that even when we receive life changing news we should not take the time to process or grieve or celebrate. Good sick people don’t have time for emotions; we need to get to inspiring people!
To be a good disabled person, you are only allowed to be disabled as long as it doesn’t interfere with anything. Using an assistive device is great as long as it doesn’t require changes to the building. Proving my point, the author of the Vanity Fair piece notes “throughout the course of our three-hour conversation, Blair offers only one complaint about her MS diagnosis…” The problem with this is that she actually had a lot of complaints related to her MS diagnosis, as the author notes throughout the article. (These complaints include doctors not taking her seriously during the diagnostic process, the way that people with disabilities are treated, extreme physical pain, etc.) The other problem is that the article glosses over Blair’s own words to paint a picture that is not the reality that Blair is explaining in order to keep abled folks comfortable.
Pretty much every disabled person I know is forced to take into account how our symptoms are perceived by others including employers, doctors, friends, family, benefits agencies, and caregivers. When I was focusing on Social Security law, I learned about a body of case law called “Sit and Squirm.” It all centers around how disability applicants show or don’t show pain during their hearings and whether and how the judges can take that into account. If applicants don’t “perform” in the proper way (not too much, but not too little either!) then it could affect whether they get benefits or not.
Blair is a thin, rich, white Hollywood actress. Thus, her experience will be very different from the majority of disabled people who don’t have the resources she has. Now, I’m not asking Blair to do anything besides share her experience. But I am asking the media to put this experience in context. Some of the most relatable parts of her story were glossed over for the feel good atypical parts.
For example, the Vanity Fair piece talks about how Blair disclosed her disabilities to her employer and was met with a supportive response. That’s great! but many disabled people (myself included) are unable to get jobs because of our disabilities. The disability unemployment rate is double that of nondisabled people. After I went “public” with my disabilities (i.e. wrote something that would show up in a google search of my name), I basically became unemployable.
Another part of Blair’s story that so many sick and disabled people have found relatable is her battle to get her diagnosis and how doctors didn’t believe she was as sick as she was. This is an incredibly important point and something that Blair seems to indicate informs a lot of her experience, yet is generally overlooked in the coverage.
Blair also makes great points about the fear of being open about what’s going with your body and how hard it is to find clothes that are accessible.
All of that is to say, Blair makes clear that the problems from her disability are not actually caused by MS, but by an incredibly broken medical system and society. Everyone wanted to focus on the cane she was using at the Oscars, but the cane was not the story. The story is that even someone who has all of the access in the world still had to go to several doctors until her symptoms were fully believed, and is now up against the same ableism as the rest of the disability community. And aside from all that, we also need to ask: why was a young person on the red carpet with a mobility device such an anomaly in the first place?
It’s time for the media to start telling accurate stories of disabled people, rather than just focusing on the parts that make abled people feel good (mostly about the fact that they are not disabled). It’s time to start looking at the whole picture.
*Following publication, a reader noted that the term “inspiration porn” was also used here prior to popularization by Stella Young: https://radicalaccessiblecommunities.wordpress.com/2012/02/14/inspiration-porn/