There are times when I catch a glimpse of what it must feel like to be my daughter, Ella—so much to say, and not quite sure how to say it. As many of you have seen on your social media and in the news there has been a lot of talk around Down syndrome since Gerber announced its spokesbaby for this year. Lucas, with his shining eyes and contagious smile has Down syndrome. The day he was announced as winner, my Facebook feed lit up with acclamation—I reposted it myself. Like many however, I remain skeptical as to how this will affect the life of Ella and other individuals who have Down syndrome, practically speaking. That being said, I am thrilled that so many media outlets have caught on to the broader conversation.
Today, André Picard from the Globe and Mail cited my friend, and colleague, Sue Robin’s blog as she considers whether having a baby with Down syndrome in marketing will, in fact, change the social prognosis of her son Aaron, who is fourteen years old.
Last Friday, David Cochrane hosted a discussion on the CBC’s The Current around the implications of the Gerber Baby campaign in relation to pre-natal testing. Lucas is cute. Of course he is, he is a baby but what will happen to Lucas when he is 18 and graduating from high school? Will he be able to get a job? Will there be a place for him to live independently?
I, as much as anyone think it is important to have individuals with disabilities in advertising. I think it is important not only to change our ideas and perceptions around beauty but, perhaps even more so, for Ella. I want her to grow up knowing that there are other individuals with Down syndrome, that they are beautiful and that they are valued. These purposes however are in relation to, but slightly different from quality of life on the ground level. It is one thing for society to come to “acceptance” of individuals with disabilities but it is a very different position than being an inclusive society. You see, an inclusive society values the contributions that these individuals make to their communities and it is shown through employment opportunities, opportunities for post secondary education, public transportation, public funding, recreation…the list goes on.
That is not to say that employment is not happening. My friend Scott, who graduated from highschool with me and has Down syndrome is respected in his places of employment, which include Thrifty Foods as well as Shell, but this is largely because of his admirable employers who saw the contributions he could make. Where I see the greatest devaluing (and perhaps more accurately dehumanizing) of individuals with disabilities is in the government and government policy. Sure, they can have an inclusive education policy (which they may or may not hold administrations accountable to) or they may have a Minister of Disabilities but when budget time comes, individuals with disabilities are often the ones left behind.
Last week, I met with my own constituency office regarding the 2018 budget and action points we would like to see MLA’s commit to in regards to a more inclusive Alberta. I live in Rachel Notley’s riding. She has a son with Autism and yet, I feel as though she has given up on the inclusion fight herself and therefore is undertaking different priorities and yet, it hugely affects her personally. Her son lives at home with her and used to work at our neighbourhood grocery store, which recently closed down to make way for a high-rise apartment building.
But is this it? Is this all we can expect: for our children with disabilities to work at grocery stores earning a minimum wage that cannot, in no way, shape, or form sustain the cost of living in cities like Vancouver or Edmonton?
Perhaps it is in our Immigration policies that we see our governments’ true feelings on Down syndrome and other disabilities. As my husband finishes up his doctoral studies he is looking for work, which may or may not come up in Canada. The only problem is that if he gets hired in the United States, or the UK, or Australia will they allow us to live there with a child with Down syndrome? Perhaps for one year, or two, but beyond that? I have my doubts. We have followed numerous stories of families who have children with Down syndrome who are kicked out of their country of choice because their children were too much of a burden on the economy—they of course make no mention of their contributions. The most famous of these stories was brought to light when Rick Mercer proclaimed at the end of one of his notorious rants, “My Canada includes an extra chromosome.” But does it? Justin Trudeau has very little to say when it comes to disabilities. Radio silence.
Part of the problem might be that you will not see as many individuals with disabilities lobbying the government for policy reform. They don’t fund the political parties and quite frankly, many of them are too busy taking care of their own welfare (because they have to work so damn hard at it) to busy themselves with blog posts like this so when push comes to shove, they lose out.
Let’s put things into perspective. As of late, there has been a big push on transgender rights. Yes! By all means, these individuals demand to have their rights respected just like everybody else. They comprise, clinically speaking, no more than .01% of the population. Meanwhile, 13.7% of Canadians live with a disability: 3.8 million working-age people aged 15-64.
So yes, thank you Gerber for raising awareness about Down syndrome. Thank you for opening the door to a broader conversation but what now? As I was chatting with the fresh-out-of-poli-sci assistant in Rachel Notley’s office I was discouraged at the lack of understanding in his eyes. What will it take for our governments to respect the needs of individuals with disabilities and see that they deserve more than the sub-par life public funding provides them? When will their contributions to society be recognized and valued?
Perhaps, you have read to this point and are wondering, what can I do?
For this, I thank you.
Advocacy happens on many levels.
- Inclusion was not a value in Ella’s school until, contrary to the administration’s wishes, I enrolled her. Now, they see the value of a caring and compassionate community where children learn from each other.
- The Gerber Baby campaign is certainly part of it. Having individuals with disabilities in advertising is something that Katie Driscoll at Changing the Face of Beauty is working hard to make a reality so buy ethically.
- Be an inclusive employer.
- Visit or write to you MLA and MP’s about the rights of individuals with developmental disabilities in Canada.
Local. Provincial. Federal.
And as Gandhi said, Be the change you want to see in the world.
I recognize this is not Ghandi, but this photo came across my feed and I thought it was beautiful. The caption read: A beautiful little girl with Down syndrome, got up from her seat during a papal audience and went toward the Pope. The girl then sat down near him and the Holy Father continued to speak while holding hands with the little girl.
Post-edit: Sometimes, it feels like we are getting nowhere but every little bit helps. After I posted this I received this email:
“I had a chance to chat with the Premier briefly about our meeting. She certainly remembers your last meeting with her and the issues you brought forward, and understands how these issues are still pressing. She intends to discuss inclusive education and the recommendations you provided with the Minister of Education, as well as with the Finance Minister in preparation for the upcoming budget. There will be more information once the details of the next budget are announced.”
I’d like to think that when we tell heart-felt stories, we are hard to ignore or forget.
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2 Comments
This is a thorough, thoughtful post, Krista. Brava to you and to your continued work to influence change at the legislative and educational level in Alberta. One baby step at a time – it is exhausting, frustrating + worth it. xo.
You are an amazing advocate Krista. I don’t have the calling nor the abilities to fight on the federal level, but I am making changes in my local church. Bringing awareness and opening the eyes of our pastoral leadership of the need for electric doors for those in wheel chairs; beginning a class for those who find the typical Sunday school classes too stimulating… it’s a small impact, but an impact none the less. Thank you for your leadership in and dedication to the area of special needs.