Let's rethink what it means to be a 'model' with disabilities

Buzzfeed was right. This video about a young woman with Down Syndrome losing a ton of weight to pursue her goal of being a model “made me feel all the feelings”… including conflicted.

Let’s start by setting some very important groundwork for what I’m about to assert. The woman featured in Buzzfeed’s video is both stunningly beautiful and inspirational. I am not attacking her, nor am I suggesting that she is undeserving of recognition. I also understand that women with disabilities are underrepresented in the media and this needs to change. This young woman simply deserves to be celebrated for the right reasons: her dedication to achieving a difficult goal and her desire to make women with Downs a more visible population.

As I’ve mentioned before in previous articles, I have both a brother and brother-in-law with Down Syndrome and I’ve spent my entire adult life working with people with disabilities. My brothers don’t aspire to be swimsuit models. They want to be champion bowlers, caring family members, hard workers at their day programs, good friends, sometimes Spiderman, and a bunch of other things that are specific to them as individuals.

The fact that they celebrate their achievements rather than how their bodies look is not because they have Down Syndrome. It’s because they’re men and the market that tells them they need to be thinner and hotter is significantly smaller. I’m fully convinced that when the brother I grew up with puts on a swimsuit, he’s not thinking about his abs or the fact that by mid-summer his farmer’s tan makes him look like an Oreo. He’s thinking about swimming into the middle of the deep end so no one can get him out of the pool. This is not to say that men with developmental disabilities don’t have body insecurities, because they certainly do. The point I’m trying to make is that women with disabilities, like women in general, are more targeted than their male counterparts by messaging that says they have to look a certain way to be visible, to be a “model.”

If this video was about a young woman with Downs deciding to take care of her body differently so that she could do the things she loves like hip-hop dancing and sports, I’d be super-soaking the internet with it, but it’s not. The fact that I had to sit through four long seconds of a Bernstein Diet ad before I got access to it was my first clue that something had gone awry.

Realistically and as the film mentioned, many people with developmental disabilities (and their families) are told that they won’t really accomplish anything. This is one of several points of agreement I have with the clip. It exposes a lie that deserves to be stamped out.

The other thing that deserves to be stamped out is the beauty industry, which tells women of all ability levels that what is important is how they look when they move rather than how they feel… And really, how is a woman with Downs supposed to feel when she sees this?
Feminist current_model down syndromeI don’t care where you are at in terms of cognitive development; when we celebrate the differences between the left picture and the right picture, everyone gets the message. You’re visible when you’re sexy.

I’d like to celebrate Madeline for the fact that she’s probably an incredible dancer and athlete. I’d also like to celebrate the fact that she’s a model as we very much need visual representations of women in the media with Downs, as well as women who have one leg instead of two, women who are visually impaired, women with colostomy bags, and women who use wheelchairs. I’d also like to celebrate women with Downs that are kicking ass at what they do (and loving it) despite looking more like the “before” picture above than the “after.” If I had a choice in the matter, I’d prefer for the teen girls I know with disabilities to seek inspiration from this video (which, you may notice, also features a woman with Downs) and remind the general public that unless you are Madeline Stuart or her physician, her weight loss shouldn’t be your concern.

If being a model means visually representing a diverse range of women’s bodies in which this young woman’s “before” picture could be included, I fully support and affirm her goal. If being a model comes with all its current diversity-erasing baggage and is owned by the beauty industry, I’d prefer we all advocate for a different way to gain visibility and representation.

Jess Martin
Jess Martin

Jess Martin is a public relations professional, an aspiring writer, and an assistant editor at Feminist Current. She prefers to write about feminist topics, disability, or environmental issues, but could be persuaded to broaden her horizons in exchange for payment and/or food. In her spare time Jess can be found knitting, gardening, or lying in the fetal position, mulling over political theory that no one in their right mind cares about.

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  • Jennifer

    I definitely think that people want to see beautiful, sexy women who are young, physically fit, and are not limited by a disability. However, my personal opinion is that I do think that there are beautiful women who do have a disability and are not represented in the media or in magazines. In addition, as women age there is also a stigma attached to women where “men” would not see them as pretty if they were to model in a magazine or take a part in a movie.

    I believe “men” have defined what is beautiful and what is not beautiful to look at. This fact saddens me because beauty is really skin deep. I believe there is a place for all women of different shapes, sizes, looks, age, and those that live with a disability or not, to be represented in a way that people will accept them for who they are. Men and women will begin to define beauty beyond what you are seeing in a picture by finding out what lies inside the their soul.

    Lastly, true beauty radiates from within all of us.

    • Rachel

      I completely agree that men have defined what is beautiful in a woman. it always annoys me when people say that the beauty we see in the media is somehow engrained into men to be attracted to (there goes the Evo-psych babble again). You just have to look through history, and even from culture to culture to see how different beauty ideals are. But I digress. I agree with this article too because it’s sad that women and girls are aching and dying to be models instead of putting energy into something they are great at rather than what they look like. And the fact that to be a model they have to be societies version of sexy is just bull. I hate it. Also when did a persons looks become eroticised anyway? I really don’t think that is what sexual attraction is based on at out very core. Unfortunately we are all so brain washed by the media to believe that sexual attraction is shallow. Ugh.

    • Cepheid

      I don’t want to be beautiful. I want the freedom to be ugly, fat, wrinkled, mentally or physically disabled, bulky, boxy, boyish, aggressive, saggy, scarred, big-footed and all those other things that aren’t considered traditionally “beautiful” and still be treated like a human being and have my accomplishments celebrated.

      I want to be judged on more than my physical form, how it meets beauty ideals, and how much my mental and physical state conform to what the mass media thinks is best.

      I’m not physically or mentally beautiful, probably never will be, and that’s okay.

      • Anna

        Yes to all of this. Some of us aren’t beautiful. Some of us don’t want to be beautiful. I don’t even want to be beautiful “on the inside” (whatever that means). I just want to be a human being that is afforded a basic level of respect regardless of my appearance.

  • catperson

    Totally agree with this article. The message is still, in the end, that ‘acceptance’ for women is limited to looking like a sex object for the male gaze.

  • ArgleBargle

    Right you are. Inspirational member of underrepresented community if female? Fashion shoot. If male? Contrast the scenes with David Pearce, who also has Down Syndrome, in the documentary The Crash Reel (about the near fatal snowboard crash of his brother Kevin). David also works out and keeps fit to meet his goals, but this is not emphasized. No long lingering camera pans up and down his body, no before and after shots, no glamming up. Instead we are treated to scenes of David winning at the winter Special Olympics, his armfuls of sports medals, working at the family glass blowing shop and fretting over his brother Kevin’s recovery. David has some of the most eloquent and insightful lines and scenes in the documentary. Listening to him talk about his family, his brother, his goals, and his disability gives a much fuller sense of who David is, and living with Down Syndrome, than a fashion shoot could ever do. Hopefully we will see more of Madeline Stuart, but more importantly, hear more from her.

  • “…many people with developmental disabilities (and their families) are told that they won’t really accomplish anything. This is one of several points of agreement I have with the clip. It exposes a lie that deserves to be stamped out.”

    While I would not go so far as to say that people with disabilities will not accomplish anything, I do not feel comfortable promoting the view that people with disabilities can do anything and are not held back by their disabilities in the slightest (which seems to be the dominant view within liberal social justice activism.) The “you can do anything you set your mind to” always leads to reactionary “personal responsibility” nonsense.

    I am worried that if the mainstream disability activist movement gets its way, anyone with a disability who does not wind up being super successful is going to accused of not trying hard enough or not being inspired enough or having a “victim mentality” or some other liberal/conservative bullshit.

    There are in fact situations in which having a particular mental or physical disability will make it more or less impossible to accomplish a particular aim (e.g. people who are blind cannot be pilots.) I understand that people with Down Syndrome can do in sporting activities, but I doubt that every person with Down Syndrome is going to have sporting aspirations. Many may have interests in field that people with Down Syndrome will have great difficulty succeeding in. This does not mean that they or other people with disabilities are not worth anything. They are humans therefore they automatically have value whether they acheive anything or not. They shouldn’t have to prove that they can make a contribution to the capitalist economy and that they aren’t “victims”.

    It would be great if everyone were able to acheive their dreams, but one should not have to succeed in a glamorous field (or any field for that matter) in order for their life to be considered valuble. Humans have value because they are humans, end of story.

    I agree with Cepheid’s claim that women should have the freedom to be (what society calls) “ugly”. Enough with this “all women are beautiful” garbage. Not all women want to please other people with their bodies/appearances. If men are allowed to brag (or at least not feel bad about) being ugly, why can’t women? Of course I would prefer it if the terms “pretty” and “ugly” did not exist at all (or at least were not applied to humans), for they are reflections of arbitrary social prejudices to begin with. That said, I do not find the thought of being less physically or mentally capable than I currently am particularly appealing. I think it is a good thing for people to aim to have healthy, capable bodies, but prettiness is a whole other thing (in fact the pursuit of prettiness usually leads to less healthy bodies.) I am okay with people celebrating improvements in physical health, but most discussions of weight loss in the media (at least those related to women) do tend to focus more on prettiness, so I understand why feminists have a negative reaction to the topic.

    • keshmeshi

      Your points about the personal responsibility aspect of this is a major reason why the story put me off and why I basically ignored all mentions of it in my social media accounts.

      Another aspect of the video too that doesn’t sit right with me is that it seems to be advocating for Madeline as a charity case. As though a modeling agency will give her a chance because she wants to raise awareness or as a human interest story and not because the agency truly thinks she has what it takes to be a model. There’s that appeal that she “would like” to be a model. Well, so would thousands, if not millions, of other girls and young women.

  • The Real Cie

    It saddens me that in the twenty-first century, being considered pretty is still the most important goal for a woman. I struggled with eating disorders and yo-yo dieting (still do struggle with the eating disorders to a degree) until I was in my mid-forties before I finally discovered size acceptance and health at every size and at last realized that yo-yo dieting was more harmful to me than being fat was. I also discovered Health at Every Size, which has made me want to stick with exercising because it makes me feel better rather than giving up on it because I never lose weight when I do it.
    One of the best things I discovered through these movements was twofold. First, there is the fact that fat women can, in fact, be beautiful. However, there is also the fact that we don’t owe it to one damn person to be beautiful. Think I’m beautiful, don’t think I’m beautiful. I don’t care. I don’t owe it to you.

  • My aunt was Down Syndrome. She lived bed rested for 45 years after she had a severe fear at age 10. We humans have evaluation in technology, but not towards change for beings who have their own intelligence. Humans are afraid of what they don’t know, but they choose to be ignorant out of laziness. When humans stop comparing themselves to each other and other species that when real evaluation will start. Until then, we’ll continue to be lazy, ignorant beings who hurt, judge,and harm other beings