In the UK this week, newspapers are full of public grief over the death of a six year old boy with severe cerebral palsy and epilepsy. Ivan Cameron was the son of David and his wife Samantha. David Cameron is leader of the official opposition party - the Conservatives. Every paper and news channel has carried a close-up photo of Cameron gently kissing the cheek of young Ivan. The nation’s heart broke in a collective recognition of love between father and son and of course, terrible loss.
No one seems to question that Ivan was hugely treasured by his family, but many seem to wonder how that could be. How is it possible to love someone who is so different from the comfortable norm? No one in the PLAN family will easily forget the published descriptions of Tracy Latimer and how her disabilities made many Canadians question the worth of her life. The Cameron family’s love for their son, witnessed in tender photos by the British public seems to have formed a kind of fuzzy second-hand salve for guilt-ridden incomprehension.
But not everyone has taken Ivan’s passing as a lesson in love and belonging. Today’s papers tell the story of Cerrie Burnell, a children’s television presenter for the BBC Children’s shows “Do and Discover” and “Bedtime Hour”. Cerrie was born without her right hand and prefers not wear a prosthetic. Now, BBC online message boards are filling up with unpleasant posts from angry parents. The Guardian reports (pg.12):
“One father said he would ban his daughter from watching the channel because Burnell would “give his daughter nightmares”. Another said it would “scare the kids” while another parent blamed “political correctness”.
Lately, I have been reflecting a great deal on the subject of human worth and more particularly, society’s perceived worth of people with disabilities. It would seem that Britons have ambiguous views on the subject and I would suggest that they are not alone in this regard. The public perception of people with disabilities has a lot to do with the idea of contribution (ie employability in this context) and a conception of physical and behavioural “normalcy”. Ivan Cameron’s death was tragic because he was six years old and adored by his father who happens to be a public figure.
In my life, the people I love most have a broad range of abilities and differences. My twenty year old son Nicholas has severe cerebral palsy and my 87 year old mother requires more assistance every day. My daughter Natalie is collecting university offers of admissions in environmental sciences and my husband Jim is the Canadian High Commissioner in London. The common thread is my love for each of them.
I sense that this week, the reading public in Britain understand love for a child with disability a little better than they did last week. But the story of Cerrie Burnell is evidence that we need a much clearer roadmap, a SATNav even, on how to forge and sustain relationships with people who are “different”. Burnell’s message for those commenting on the BBC message boards “is that she hopes the controversy will help other people “see the person and not the disability”.
Personal support networks teach us that lesson, because love and care form the heart and lifeblood of their functioning. I have found only one entirely inclusive definition of intrinsic human worth and it is theological. Hans Reinders in his “Receiving the Gift of Friendship: Profound Disability, Theological Anthropology and Ethics” (2008) argues that receiving God’s love is the only scale of worth where people with severe disability have equal belonging. It’s a good idea except for the atheists among us.
Children, babies, the elderly, those with disability – surely their worth is defined by the love that we have for them. For those who are lonely and isolated, worth becomes the “potential” of love and caring. I think Reinders is correct, but for those who are non-believers, let’s just gaze at Ivan’s rounded cheek being kissed by his adoring father and think about that as a spot on the roadmap of how anyone can be “In” the Belonging Club.