When a doctor at Children’s Hospital of Philadelphia told New Jersey mother Chrissy Rivera last month that her 3-year-old daughter was ineligible for a kidney transplant, she was incredulous and furious.
“Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?’’ she wrote in her blog on wolfhirschhorn.org describing the meeting.
Rivera’s play-by-play of what happened that day and her emotional reaction to the doctor’s words went viral. Disability groups got involved, the press weighed in, the story made national news. Even the Presidential Commission on Bioethical Issues took note. A few weeks later, the hospital reversed its decision.
What’s remarkable about all this isn’t that the hospital changed its mind. What’s remarkable is that the public was immediately on the disabled child’s side. Only a few decades ago, the American public didn’t concern itself with children with rare genetic defects. There were institutions. The children were out of sight. The public didn’t care because it didn’t know these kids. And now that we do, we rush to protect them.
We may have a long, long way to go in accepting all people with disabilities and in including them in everyday life and in providing for them. People with disabilities are the most medically underserved group in our country, turned away from doctors’ offices and denied medical procedures every day. Amelia Rivera’s case is not unique.
But we have come a long, long way, too. The public reaction to Amelia’s plight is proof.
My granddaughter Lucy has Down syndrome. For years, children with Down syndrome were put in institutions and separated from the world. They weren’t deemed educable, so they weren’t taught. They weren’t deemed valuable, so they weren’t valued.
It was this way for decades. Now it isn’t. Times have changed and we have changed, too.
Deinstitutionalization. Special Olympics. The Americans With Disabilities Act. No Child Left Behind. The prevalance of children with autism. All the walks that promote awareness.
These have propelled change.
People who were once locked behind brick walls are now our neighbors, are in school with our kids, wheel down the street in motorized chairs, live in group homes, use augmentative speech programs, work, socialize, play.
And we see them.
And if we don’t see them in person? They’re on TV for us, Becky with Down syndrome and Artie in his wheelchair on “Glee’’; Brick with his quirkiness on “The Middle’’; the brilliant but socially challenged Sheldon Cooper on “The Big Bang Theory’’; Max Braverman on “Parenthood’’; Jake on the new series “Touch’’ - all actors, yes, but that’s not what we see. We see people who are different, fitting in, being accepted, being loved.
Heather Mills, who has an artificial leg, and J.R. Martinez, who was burned in Iraq, were on “Dancing With the Stars.’’ “How’s Your News,’’ “Breaking Bad,’’ “Friday Night Lights,’’ and “The Secret Life of an American Teenager.’’ We watch these shows. We see these performers. And we come to know them.
To know someone may not lead to loving them. But it most always leads to liking them. And though there aren’t nearly as many disabled people represented on TV as there should be, as there are in real life (just 1 percent, compared with 12 percent of the US population) getting to know some is better than getting to know none.
TV changes attitudes. It’s been blamed for glorifying violence and denigrating women and turning young kids into anorexics. And it deserves the blame.
But it deserves a little praise, too, for breaking down social barriers. For showing that women can be happy out of the kitchen, that divorce is not the end of the world, that minorities are people with different skin color, that gays make good parents, that life, even at its best, is always, always imperfect.
That everyone is imperfect may well be the next lesson that television teaches.