For all of my talk about “more alike than different,” one crucial element about our family is very different from families with only typical children: the fight for acceptance, inclusion, and equality for our differently-abled kids.
In our world, the highs are extra high; the lows are extra low.
Last week, Nathan and I spent six days at Walt Disney World for marathon weekend. We stayed in Winter Garden with our like-family friends, the Rileys, and met up with many more friends from all over the country who are members of Running of the Ears (ROTE), an online community for runners who love Disney.
A large contingent of ROTErs had dinner together on Sunday night, and by the time dinner was over, I recognized a pattern – everyone who came by our table to visit came to see Nathan, and most of them ONLY came to see Nathan.
These folks aren’t people who have kids with special needs. They are typical people – people who happen to be my friends (most of them predating Nathan) who have embraced him just as he is. Figuratively AND literally.
It was a great week of living in the friendship bubble.
The week that we left for Disney, the news broke about Target’s quiet inclusion of a child with Down syndrome in their weekly ad. He was included just as he should have been, without a press release or fanfare of any kind – in fact, all of the “buzz” about the ad originated from parents like Noah’s dad.
The Target ad was one of the highs – a snapshot of the world as it should, and could, be.
Unfortunately, the real world falls far short of the Target ad and the friendship bubble. Consider the case of Amelia “Mia” Rivera, a three-year-old girl with Wolf-Hirschhorn Syndrome, a rare chromosomal abnormality, who became an overnight blogosphere celebrity, and not in a good way.
Amelia needs a kidney transplant. If she doesn’t receive one within six months to a year, she will die. Last Tuesday, her parents arrived at Children’s Hospital of Philadelphia (CHOP) for what they thought was a meeting to discuss their daughter’s transplant options. Instead, the Riveras were told that Amelia would not be recommended for a transplant, even if a kidney was donated by a family member.
According to the Riveras, the doctor told them that Amelia would not qualify for a transplant because she is “mentally retarded” and has “brain damage.” When questioned further by the Riveras, her “quality of life” was also cited.
The case of Amelia Rivera is disturbing.
Organs are scarce, so on some level perhaps it seems reasonable to “save” them for individuals who are healthier. Of course, the practical application of that assertion means that doctors are in the powerful position to choose winners and losers in a deadly scenario that is anything but a game to a patient and her family.
But in Amelia’s case, the scarcity of organs shouldn’t have been an issue. The Riveras anticipated that a family member would donate a kidney for Amelia, so choosing to accept Amelia for a transplant wouldn’t result in the denial of another patient.
Perhaps there were other, more clear-cut, legitimate reasons not to recommend Amelia for the transplant (if there were, the Riveras were given no indication of it). Perhaps, with the medical expertise the doctor and his team have, they are certain that Amelia’s transplant would not be successful.
But of course there’s another option. Time and again, both medical professionals and laypeople have asserted that children like Amelia – and Nathan – are a “burden to society” and that we should “ease their suffering.”
Perhaps the doctor at CHOP doesn’t believe Amelia Rivera’s life is worth saving.
At least once a month, I consider whether I should commit my blog to being more light-hearted and positive. I wonder if my message might be better received if I placed a greater emphasis on the highs – after all, the lows are much more rare. And sometimes I simply grow weary of blogging about “issues.” But then I come across a story like Amelia’s and I remember why I don’t stick to stories of wild toddlers, pierced ears, and kids races.
If I, and others like me, don’t speak up, who will?
Further reading on Amelia Rivera:
Note: CHOP has neither confirmed nor denied the account provided by the Riveras (appropriate, given that the case involves private medical records), although they have responded to the public outcry on their Facebook page.