The BBC news headline jumped off the page,
Spain elects first parliamentarian with Down’s Syndrome.
The words lay over the photo of Mar Galcerán, a 45-year-old woman who made history by becoming Spain’s first parliamentarian with Down syndrome.
The photo and the headline from one of the world’s leading news sources had me grinning from ear to ear saying out loud, “yes! Mar! Get it.”
My joy quickly shifted when I turned to the next image. I saw the same woman but this time sitting in The Cortes Generales, the bicameral legislative chambers of Spain, with these words typed under her image,
Society is starting to see that people with Down’s syndrome have a lot to contribute.
Big sigh.
Here we go again.
You might be thinking “Heather, what is the problem?” Well, allow me to explain further:
First, I LOVE this news story about Mar Galcerán. A woman with Down syndrome committed to inclusion and civil service having the same access and opportunities as civil servants without Down syndrome. It is a huge win for inclusion, belonging and the Down syndrome community at large.
Three cheers to Mar Galcerán and to the world for paying attention.
However, things go wrong for me with the way the BBC frames this story. What they are communicating with the headlines they chose is, a person with Down syndrome who is able to do something like be elected as a government official, has a lot to contribute to society. This framing communicates to the world that people with Down syndrome have a lot to contribute only when they can accomplish big things or only when they can accomplish the things that people without Down syndrome more commonly accomplish. This framing is problematic and I would argue, counterproductive and ultimately harmful for people with Down syndrome. Rather than shouting the worth of a person with Down syndrome there’s a need to prove the worth of a person with Down syndrome making it seem as though people with Down syndrome only deserve a space in this world when they can meet certain criteria.
Yes! Let’s celebrate Mar Galcerán but it starts to get tricky when we leave it at that and ignore the bigger conversation or worse, allow a narrative to take place telling the world that people with Down syndrome have something to contribute only when they are exceptional or more like people without Down syndrome.
No one is questioning if myself or my non-disabled daughter have anything to contribute to society. Because we are non-disabled it is assumed. Let that sink in. We live in a world telling us disabled people are less human and in a culture telling us our value and worth is directly linked to our accomplishment. We have built our government systems, school systems, communities and personal belief systems on the idea that non-disabled people are preferred to disabled people. Access and opportunities are assumed and plentiful for non-disabled people.
If we want to make progress and even begin to undo ableism in our own lives, communities and societies, then we need to call it out when we see a national news story communicating to us that a person with Down syndrome is contributing to society only because she is doing something grand like holding a political office.
This harmful yet subtle narrative shows up over and over again in news cycles sharing inspiring stories highlighting disabled people “overcoming” their disability, and is further perpetuated by our Down syndrome community when over and over again we point to and celebrate the accomplishments of people with Down syndrome when they are able to be more like people without Down syndrome. So much so that many of us raising kids with an extra chromosome are willing to try just one more thing in order for our kid to be “more like that!”
As a parent to two kids with Down syndrome and as an advocate and ally in this community the soapbox I find myself standing on time and time again is this:
The greatest contribution my kids and friends with Down syndrome are making in this world is showing people that a human’s value and worth does not hinge on what we can and cannot do. Their greatest contribution is showing up in the world exactly as they are and challenging a narrative telling us our value and worth as a human is earned. Their greatest contribution is their existence.
Period. Full stop.
I am not saying the BBC should not have shared the story of Mar Galcerán. For the Down syndrome narrative to shift we need these stories to be told and heard. What I would challenge is for the folks at the BBC as well as those of us consuming the headlines, to do the hard work of undoing ableism in ourselves so we can truly see the value and worth of all people with Down syndrome. Then, maybe the story can be told in a way that helps all people with Down syndrome to be seen as fully human and worthy of a space in this world, not just those who are more like people without Down syndrome. Tell the story but reframe the headline to go something like this:
Society is starting to see that we are better off when people with Down’s syndrome are included.
Can you see how that shift in the framing changes the whole story to be one in support of inclusion for all people with Down syndrome?
By including Mar Galcerán into the Spanish parliament the people of Spain have stopped towards an invitation into what I believe every life of every person with Down syndrome invites us to. An invitation to reconsider what it means to be human. An invitation to view the world in a less inhibited and more graceful way. An invitation to grab ahold with all our might to the truth that our value and worth is innate and the breath in our lungs, the heart beating in our chest and our ability to love and be loved are what make us human and should not have to be earned. As far as I’m concerned, this invitation to a shift in a narrative that every person with Down syndrome I’ve ever met offers society, is as great a contribution as there’ll ever be.
