Kindergartner Claire Koch of Clearwater, Florida, wanted her mom and dad to fully enjoy her holiday concert. So she did one thing: She signed it for them. Both her parents are deaf. The video her mom, Lori, posted on YouTube has gone viral worldwide.
The signing wasn’t planned; Claire, 5, just decided to do it. “We don’t use Claire to interpret for us—she did it because that’s how she communicates with us,” says Lori. She uploaded the video on the heels of the Nelson Mandela funeral scandal, in which a so-called deaf “interpreter” signed gibberish while standing with global leaders. (Yesterday, word came out that he’d been admitted to a psychiatric ward.)
“Claire’s video put a positive highlight on a bad experience,” Lori says. Marlee Matlin retweeted it with the words, “This is too cute. Can you spot the child who has deaf parents?”
Claire’s become somewhat of a celebrity at her school. “Some fifth-graders came up to her and introduced themselves by finger-spelling their names in sign language,” says Lori. “She was really inspired by that.”
These are some descriptions that regularly come up in my Google feed:
“Cerebral palsy sufferer”
“She suffers from Down syndrome”
“Cerebral palsy victim”
Before I had a kid with special needs, I would have read right over the words. Now that I have Max, who has cerebral palsy, they make me cringe. Words like “victim” and “sufferer” depict disability in a negative way, making it seem tragic for a person to have them. These are words that make you feel sorry for kids like my son, which is a shame because what he needs is parity, not pity.
I have gotten flack for speaking out against the word “retard,” a word that’s become a slur. I am sure people will say I’m being uptight and overly p.c., too, for pointing out how this wording victimizes those with disabilities. But words matter, especially when kids grow up hearing adults use them. Words shape our perceptions of people with disabilities, and how welcome we make them feel in this world.
The other day, a guy emailed me about a group he’s involved with that pairs athletes with disabilities and ones without them (described as “able-bodied”) for endurance events. I pointed out to him that able-bodied is a disparaging choice of words. His response was to reassure me that even though the wording may “appear as a negative” they meant nothing but “the most positive things” for all involved. I had no question about that—I just didn’t understand what the big deal is to change the wording.
My son, and kids like him, could use all the positive reinforcement they can get in this world. At times, it’s hard enough for them to fit in. I think I speak for many parents when I say I’d sure appreciate people—especially the media—using non-loaded wording to describe disabilities.
Instead of “he suffers from cerebral palsy” or “he’s a cerebral palsy sufferer,” just say “he has cerebral palsy.”
Instead of “wheelchair bound,” try “wheelchair user.”
Instead of “able-bodied” or “normal” go with “non-disabled person.”
J.J. Hart, a three-year-old boy with autism, used to sit around staring into space a lot. He barely spoke, and had temper tantrums. Then his dad started looking into animal therapy for kids with autism. He bought a few chickens for J.J., who dubbed them “ducks.” These days, his mother has said, “He’s able to communicate much better. And it all has to do with the chickens. He plays with them. He cuddles with them. And he runs around the yard with them…. It’s made a tremendous difference.”
A year ago the town where the Harts live, DeBary, started a one-year trial program that allowed residents to keep chickens in backyard coops. Now the city council has announced the program is ending; J.J. will be forced to give up his chickens by December 31. As council member Nick Koval said, “It’s unfortunate, and I sympathize. But we spend a lot of time and money establishing codes and ordinances for the protection of the citizens and taxpayers of this community. And I believe that they [chickens] belong in agricultural areas.
While it’s more common to use horses and dogs in therapies, J.J. has a connection with the chickens. Given that kids with autism are very sensitive to change, getting rid of the chickens could be traumatic. J.J.’s parents have hired a lawyer to get the council’s decision reversed.
Perhaps this story is hard to understand if you don’t have a child with autism or other special needs. Perhaps the pre-parent me would have wondered what the big deal was to give up the chickens. But now, I understand what it’s like to do anything and everything to help your child with special needs thrive, whether it’s chickens or alternative forms of therapies, as we’ve tried over the years. When you find something that works, it can seem downright miraculous.
Stories like this have cropped up over the years. Last January, a boy with Down syndrome in Coral Springs, Florida, who had a house-trained therapy pig was granted the right to keep him after officials threatened to fine his mother to $500 a day for violating local ordinances. In Lexington, Kentucky, parents of a three-year-old with cerebral palsy built a playhouse where he could get physical therapy; the local Homeowners Association asked them to take it down. Last year, because of their case, a House committee nullified deed restrictions on small outdoor structures deemed medically necessary for kids 12 and young. And in Spring, Texas, in 2012 a local family won the right to keep a baby kangaroo to help their 16-year-old daughter, who has Down syndrome.
My heart goes out to J.J. and his parents; I hope they win their fight. If J.J. and his chickens lived in our neighborhood, if it were a matter of enabling a child, then to me there would be no question: Let the boy have his chickens. It’s the humane thing to do. The mayor of DeBary, Bob Garcia, agrees. As he’s said of the chicken program, which he hoped to extend until 2015, “It had so many benefits for this child. And it would have shown that we’re a community that is compassionate and understanding.”
Lately, there’s been lots of news about “curing” special needs—scientists pinpointing the gene for autism or discovering it’s possible to switch off the genetic material responsible for Down syndrome. If you love a kid with special needs, this can be troublesome to hear. So when when there’s research that will help our perfectly imperfect children, it’s reason to rejoice.
Oxytocin can enable children with autism to process social cues, finds a new study from Yale Scale of Medicine. Given as an inhalant, the hormone generated increased activity in parts of the brain associated with social connection. In another study released earlier this fall, researchers at John Hopkins and the National Institutes of Health identified a compound that bolstered learning and memory in mice with a Down-syndrome-like condition; they say it has promise for humans, too.
I’d do anything I could to improve life for my son, Max. He had a stroke at birth that lead to cerebral palsy. But give him a new life? That’s so hard to wrap my head around.
If you’d asked me, before I had a child with special needs, whether I would want to prevent autism, Down syndrome, cerebral palsy (CP) or any number of disabilities, I would have said yes, unhesitatingly. Then I had a child with special needs. And now, there’s no longer a black and white answer.
My son Max is not defined by his disability, but it is a definite part of who he is. I don’t look at him and see a child who needs to be “cured” or “fixed.” I see my child, a cheerful, funny, inquisitive, charming kid (with really good hair). Research that seeks to “cure” disability and wholesale eradicate it concerns me. What kind of awful (not to mention bland) world would we live in if everyone fit the societal mode of “normal?”
The research that seeks to help with symptoms, however, is welcome. If there were a way to permanently loosen up my son’s stiff fingers and feet, I would (CP) causes muscle spasticity). If there were a drug that could help Max better pronounce words—which he tries so hard to do—I’d give it to him in a heartbeat. Max knows that he has CP, but he hasn’t yet expressed to me how he feels about having it. He takes his condition for granted. Perhaps he will someday wish he didn’t have it. But as his parent, even as I try so hard to empower Max to the best of his abilities, I know I’d miss his disabilities if they were gone. He’d be a different child. Perhaps that sounds terribly selfish, even cruel; it’s hard to comprehend unless you are a parent of a kid with special needs—or a person with one.
Lately, I’ve been exchanging emails with an adult who has cerebral palsy and reads my blog. Yesterday, she wrote: “While there is a part of me that knows what I don’t have, and I used to grieve for it, I can honestly say that I am at peace with who I am now. Now, if I could have one wish granted, I would not ask for the ability to walk without my crutches. They simply don’t bother me anymore. There is a part of me that is afraid that if I wasn’t differently-abled, I would be a totally different person with a different personality.”
I knew exactly what she meant.
I would not want a whole other child, because I love the one I got.
Obviously, any kind of discrimination against kids and adults with disabilities is troubling. But two recent headline-making incidents have me mulling over blatant discrimination vs. the cowardly kind.
“You are parked like a complete jackass!” read the note left on the windshield of a wheelchair van lift belonging to Desiree Parisien, who has muscular dystrophy and lives in Saskatoon, Canada. “You are in two spots, one of which is for pregnant ladies! Stupidity is not a handicap, use your wheelchair sticker for a better cause. Don’t use it for an excuse.”
Because Parisien drives a side-ramp van, she typically requires more room than the usual wheelchair parking spots provide. It’s not the first time she’s gotten these sort of notes, she’s said. “Fundamentally, it shows that there is a sea of non-understanding in the ambulatory world,” said Judge David M. Arnot, Chief Commissioner of the province’s Human Rights Commission. Not to mention non-decency.
Then there’s the story of Lexi Haas, an 11-year-old girl who has kernicterus, a form of brain damage caused by excessive jaundice. As her father, Dr. Ken Haas, told CBS news, the family was in Savannah, Georgia on a trip and went to visit the Ships of the Sea Museum. They were stopped at the doorway by an employee, who said Lexi’s wheelchair was too dirty to come inside. Lexi was permitted to use a wheelchair owned by the museum, but she couldn’t because it lacked straps to hold her up. The family was then told Lexi could sit outside and watch a video while the rest of the family went through the museum. Eventually, the museum sent a letter of apology to the family, noting that the employee had been dismissed.
Both incidents make you mad and sad if you love someone with disabilities (or have one yourself). But as the parent of a kid with special needs, the windshield-wiper message triggered another emotion: fear. It’s unsettling to hear about awful things people think about those with disabilities, the prejudice they harbor and their utter ignorance—and think about how that someday might affect your child.
The inaccessible places of the world and the people who blatantly discriminate are ones we can rally against. There are laws on our side. We can raise a ruckus, make change happen, get apologies. (This mom, for one, recently spoke out when her daughter with disabilities couldn’t participate in a pageant). But the cowardly people of the world—the anonymous haters who leave nasty messages on windshields, on your blog about your child with special needs or on your YouTube videos—can trigger your worst concerns.
Thanks to social media, stories like this can end up doing good. People who have no idea why a wheelchair van lift would take up two spots may now understand and not cast judgment next time they see that happen. And of course, you can choose to pity the ignorant and the prejudiced for having to live with themselves. As parents, the best we can do is continue to speak out and raise awareness, and hope that we are creating a kinder, more understanding and educated world for our kids.