The Guardian, a news source in the United Kingdom that is read internationally, published a feature article about individuals with Down Syndrome who have been taking high-profile roles in the entertainment industry and other media. Hayley Maitland (2021) began her story in this way:

In the middle of last winter’s lockdown, while still adjusting to the news of their newborn son’s Down’s syndrome diagnosis, Matt and Charlotte Court spotted a casting ad from BBC Drama. It called for a baby to star in a Call the Midwife episode depicting the surprising yet joyful arrival of a child with Down’s syndrome in 60s London, when institutionalisation remained horribly common. The resulting shoot would prove a deeply cathartic experience for the young family. “Before that point, I had shut off certain doors for baby Nate in my mind through a lack of knowledge,” Matt remembers. “To then have that opportunity opened my eyes. If he can act one day, which is bloody difficult, then he’s got a fighting chance. He was reborn for us on that TV programme.”

It’s a fitting metaphor for the larger shift in Down’s syndrome visibility over the past few years. While Call the Midwife has featured a number of disability-focused plotlines in its nearly decade-long run – actor Daniel Laurie, who has Down’s syndrome, is a series regular – the history of the condition’s representation on screen is one largely defined by absence.

[Just a note: Although I understand that the preferred term for trisomy of the 21st chromosome is “Down Syndrome,” in this post I frequently quote from sources that expressly used “Down’s Syndrome.” When I quoted others’ work, I maintained the term that the authors used.]

Ms. Maitland reported that coverage of actors with Down Syndrome accelerated after the film “The Peanut Butter Falcon” featured Zack Gottsagen as a lead performer. She illustrates by referring to Kassie Mundhenk who is featured in The Mare of Easttown.

Normalizing portrayals

Characterization of disability and those who have disabilities have often been pejorative and demeaning, condescending or pitying. Wolf Wolfensberger proposed that one will “find seven chief social roles in which people have been cast at different times and places. The retardate has been seen as subhuman (an animal or vegetable), as a sick person, as a menace, as an object of pity, as a burden of charity, as a holy innocent, and as a developing person” (quoted from Race, 2003, p. 16). Perhaps not all seven of these characterizations are seen in contemporary media’s portrayals of individuals with disabilities, but too few seem focused on seeing individual “as a developing person.”

The concern is not one solely held by Wolfensberger. Elliot and Bird, (1982), McClelland (1981), Shapiro (1994), and many others have provided similar analyses.

It may seem that those views are from a by-gone era. Please don’t think they’ve been replaced. In an earlier post, I mentioned Dan Willingham’s (2018) plea from the Los Angeles Times under the headline, “My daughter is disabled. Please don’t look away from her.” (See, also Betsy Talbott’s comment on that post in which she drops a link to a similar article.)

Ms. Maitland and others seem to applaud more normative depictions of individuals with disabilities. Individuals with disabilities should not be feared, pitied, or patronized; probably a very good way to avoid such representations is to have individuals with disabilities acting as the characters who have those disabilities.

In other media

Individuals with Down Syndrome are not only appearing in movies and TV shows. Ms. Maitland wrote about Ellie Goldstien and Madeline Stuart, for examples, who model clothing and other products. Also see Victoria Lambert’s reporting about Natalie Newman (2014), who has appeared in various advertising campaigns in the United Kingdom.

As Ms. Maitland noted, there are also examples of individuals with disabilities acting on stage (e.g., Jamie Brewer) and presenting content (e.g., George Webster; in addition to Ms. Maitland’s reporting, see Pidd, 2021; Purcell, 2021). This video shows Mr. Webster in a BBC children’s show:

In a post about individuals with disabilities appearing in mass media, it is not out of place to mention other individuals with disabilities who have performed in media presentations. Here are two or three few historic instances:

• Jason Kingsley began appearing on Sesame Street in 1975 as a 15-month old. He continued acting after that debute, appearing in 54 other episodes of the children’s show as well as other TV shows.

• Marlee Matlin received substantial recognition (Academy Award, Golden Globe) for her performance as the lead in “Children of a Lesser God.” If you haven’t seen it, let me recommend that you do so; it’s just a commercial movie about love and people.

• GoSprout and Sproutflix deserve a special mention because the parent organization has an extensive catalog of media, including not solely productions that feature individuals with disabilities, but ones on which those people have contributed to the writing and production. Learn more about GoSprout-Sproutflix by searching YouTube for the Sproutflix channel, where readers can see many products.

• Those examples do not include the much more recent CODA, about which I posted 15 August 2021.

Representation

In the media businesses, actors, models, and other performers need representation. Sometimes whether someone gets a job depends on what agency represents the performer.

There are agencies that expressly or even exclusively represent performers with disabilities. They include these:

• Performing Arts Studio West https://www.pastudiowest.com/ provides training, coaching, and management for individuals with disabilities. It is affiliated with State of California Department of Developmental Services, in the Los Angeles area, and has been going since 1998.

• ZeBeDee Management https://www.zebedeemanagement.co.uk/ bills itself as “a specialist talent agency created to increase the representation of people who have until now been excluded in the media, including people with disabilities or alternative appearances and trans/non binary.” It was founded in the UK but works world wide, with offices in London, New York, and Los Angeles.

• Kazarian/Measures/Ruskin & Associates https://www.kmrtalent.com (often just KMR) is a full-range talent agency, includes a department devoted to talent with disabilities. “The KMR Diversity Department specializes in character actors and models with diverse disabilities for Film, Television, Commercials, Theatre, Print and Live Appearances. KMR has a long history working in this community and proudly represents some of its finest working actors.” With headquarters in Los Angeles, KMR also has offices in New York and Atlanta.

Why is this newsworthy?

Ms. Maitland provided an extended quotation from an interview with Mr. Webster. In it he made an important point that resonates throughout much of the reporting on media portrayal of individuals with disabilities:

“It’s really important for children to see me on the TV, and for me to be a positive role model. I never had anybody like me on the telly growing up. More people with Down’s syndrome and other learning disabilities need to be given spaces on programmes to help everyone understand what Down’s syndrome really is.”

I find Mr. Webster’s observation important. As noted earlier, too many illustrations of individuals with disabilities in mass media cast the individual as pitiable, surprisingly heroic, or threatening

In Peter Shanley’s article for The Hollywood Reporter (2019), Timothy Shriver (board chair of Special Olympics) welcomed the growing opportunities available to actors with disabilities. But, Mr. Shriver also disparged how people with disabilities have been portrayed, often by actors who do not themselves have the disability portrayed.

Mr. Shanley reported that Mr. Shriver, having championed publicity for Special Olympians for many years, had this to say about Mr. Gottsagen’s starring role in “The Peanut Butter Falcon”: “It’s a big change and it’s a good one,” ... “Zack is an aspirational figure and people want to be like him. God damn it, that’s huge.”

Mr. Shriver has it right.

Sources

Elliott, T. & Byrd, E. K. (1982) Media and disability. Rehabilitation Literature, 43(11-12), 348-351.

Lambert, V. (2014, June 25). ‘There are no limits to what Natty can achieve’: The seven-year-old with Down’s syndrome has hit the headlines because of her role in a Sainsbury’s ad campaign. Here her parents talk about their extraordinary daughter. The Telegraph. https://www.telegraph.co.uk/news/health/children/10922996/There-are-no-limits-to-what-Natty-can-achieve.html

Maitland, H. (2021, 27 November). The stars with Down’s syndrome lighting up our screens: ‘People are talking about us instead of hiding us away’: From Line of Duty to Mare of Easttown, a new generation of performers are breaking through. Meet the actors, models and presenters leading a revolution in representation. The Guardian. https://www.theguardian.com/society/2021/nov/27/the-stars-with-downs-syndrome-lighting-up-our-screens-people-are-talking-about-us-instead-of-hiding-us-away

McClelland, J. (1981, summer). Disabled people and the movies. Metro Magazine: Media & Education Magazine, 54, 12-16.

Newman, H. (2021, October). Presenter with Down’s Syndrome: George Webster delights CBeebies viewers: George Webster show [sic] us why we all need to see ourselves represented in the media. DownsSideUp. http://www.downssideup.com/2021/10/presenter-with-downs-syndrome-george.html

Pidd, H. (2021, 22 September). ‘I’m loving life,’ says first CBeebies presenter with Down’s syndrome: George Webster, a 21-year-old actor from Leeds, was overwhelmed by the reaction to his first BBC show. The Guardian. https://www.theguardian.com/society/2021/sep/22/im-loving-life-says-george-webster-first-cbeebies-presenter-with-downs-syndrome

Purcell, E. (2021, 27 October). George Webster: First CBeebies presenter with Down’s Syndrome. Disability Horizons. https://disabilityhorizons.com/2021/10/george-webster-first-cbeebies-presenter-with-downs-syndrome/

Shanley, P. (2019, 25 October). “Damn it, that’s huge”: Actors with Down Syndrome are finding more work in Hollywood. The Hollywood Reporter. https://www.hollywoodreporter.com/movies/movie-news/damn-it-s-huge-down-syndrome-actors-are-finding-more-work-hollywood-1248524/Race, D. P. (Ed.). (2003). Leadership and change in human services: Selected readings from Wolf Wolfensberger. Routledge.

Shapiro, J. P. (1994). No pity: People with disabilities forging a new civil rights movement. Broadway Books.

Willingham, D. T. (2018). My daughter’s disabled. Please don’t look away from her. Los Angeles Times. https://www.latimes.com/opinion/op-ed/la-oe-willingham-how-to-interact-with-a-disabled-child-20180322-story.html