I’ve watched this video of Jack Carroll auditioning for Britain’s Got Talent again and again. Throughout the routine the 14-year-old, who has cerebral palsy, poked fun at himself and the challenges he faces, opening with the line “Don’t worry, I know what you’re thinking: Harry Potter has had a nasty Quidditch accident.”
Jack is genuinely funny, and he’s got great timing, too. One of the judges called him “a comedy genius.” As I watched him perform, I kept thinking: I hope Max can someday make fun of his own cerebral palsy.
If that sounds weird, I can assure you, it’s not something I’d ever put down as one of Max’s therapy goals. But here’s the thing: Jack is able to own his disability. As he said, “A lot of times in comedy, your strengths are your weaknesses.” If you yourself display “the elephant in the room” (as he called it) then it makes people more comfortable.
I think of the gapes and stares Max gets from other kids. And how, if he were able to be self-deprecating, it would make kids more cool with him. Right now, he’s at the stage where he’s becoming aware that he has cerebral palsy. I don’t know when and if he’ll have the awareness to joke about it, I just hope he does.
Yes, I do mind when comedians make people with disabilities the butt of their jokes. That may sound contradictory, but consider this: When a person with disabilities can poke fun at himself, it makes him less of a person to be pitied, less of a victim. He can bust clichés. He can shift the power.
And I want my son to have all the power he can to charge through life.
People with disabilities are twice as likely to become victims of crime as as those without disabilities, per The National Crime Victim Survey. What doesn’t seem to have been studied: How often people with disabilities are likely to be harmed by police who are not aware of how to handle them.
This is an issue recently thrust in to the public eye with the tragic death of Robert Ethan Saylor, a 26-year-old with Down syndrome. As is widely known by now, back in January Saylor was at a movie theater and refused to leave because he wanted to see the next show. After authorities were called, Saylor resisted attempts to be removed and grew agitated. The officers pinned him down on his stomach and handcuffed him, letting up only when Saylor showed signs of distress. His death was ruled a homicide, by asphyxiation.
His death, and the lack of criminal charges pressed against the officers, has caused an uproar in the Down syndrome community. But it’s also been incredibly unsettling to others who have loved ones with disabilities. It’s made parents like me hyper-aware that adults who are unable to communicate as others can, who get upset by certain situations and who may not be able to follow orders are at risk of being considered disobedient by police, risking harm. Max, who has cerebral palsy, will grow up to be that adult, most likely. And what if, even now, he got lost in a crowd? What if he wigged out? What the average policeman know how to handle him? No, I think.
It was heartening to read that this week, New York State rolled out the first ever sensitivity training for police offers to help them better interact with people who have developmental disabilities. Although the First Responders Disability Awareness Training is not mandated by the state, New York’s Developmental Disabilities Planning Council pushed for funding it. Currently, as seems to be the case in other states, New York has no protocol for arresting and charging suspects with developmental disabilities.
The American’s With Disabilities Act website offers publications that inform law enforcers about handling people with disabilities. How many police officers actually read them, or get any training, is a big, worrisome question mark. Sometimes, decency and common sense alone won’t help.
I have enough concerns about how my son will navigate this world as he grows up. I hope that authorities in cities and states around the country learn from the tragedy of Robert Ethan Saylor and, in the coming years, start training their police to better understand people with disabilities—and do right by them.
Hopefully, non-profits that advocate for the disabled will keep pushing for this. People who have loved ones with disabilities can call their local police precincts and ask for this. Meanwhile, I’ll be holding Max’s hand extra tightly when we’re out.
Here’s a happy story we could all use right about now. Jonny Hickey is an 8-year-old boy in the Atlanta area who has autism. Xena is a pit bull who was abused as a puppy and abandoned on the side of a road last September, severely emaciated near death. The Friends of Dekalb Animals rescue group found her, named her Xena The Warrior Puppy and nursed her back to health. Xena became a Facebook star, raising thousands of dollars to help other abused animals.
At a fundraiser, Xena ran over to a little boy—Jonny. He’d been a withdrawn child who didn’t speak much or interact with others. The two became fast friends and in March, his family adopted Xena. The dog has turned out to be the best therapy for Jonny, says his mom, Linda. As she wrote on Facebook:
I am certain God has everything to do with bringing Xena to my family…to Jonny. Jonny has a very limited vocabulary, which is growing every day…but since Xena came into our home, Jonny has not stopped talking. He talks to her all [the] way home from school, during homework, and afterwards he plays with her until dinner. Every day he gently touches her nose, wanting to put Band-Aids on her boo boo. He hugs her. He kisses her. He sings to her…and yells at her when she steals his toys. All this is music to this Mommy’s ears. Jonny has personal space issues as many children with autism have, and he doesn’t like anyone too close. So it brings tears to my eyes when I see Xena on his lap in the car with Jonny smiling, kissing and hugging her…. I pray that seeing Jonny may have made you realize that autism does not define these children. They have the same dreams we all have…they want to be accepted and loved…they want happiness.
Jonny and Xena made a video to help promote Autism Awareness Month. As he said, “I think we make a pretty perfect team to spread the word.”
Do puppy-love stories get any better than this? I don’t think so.
This last week has been a grueling one for a beautiful family, along with the momosphere. Gavin Leong, age 5 and 1/2, passed away. His mom, Kate Leong, writes the beloved blog Chasing Rainbows; it was a finalist for Parent’s annual Blog Awards. Gavin went into cardiac arrest last Wednesday following a seizure, and died on Sunday evening. The outpouring of love and support on Kate’s blog and Facebook has been tremendous. So many of us were wishing for the miracle and, when it became clear that Gavin wasn’t going to make it, we sent countless thousands of prayers and supportive messages.
I have experienced other tragedies —a friend’s untimely death, my father’s passing, my son’s stroke at birth—but never the death of a friend’s child. As I’ve struggled with despondency, bewilderment and anger, I’ve found comfort in some basic life truths:
Humans have amazing resiliency.
I never realized how much strength a parent could possess until I saw the photos Kate put on Facebook of her rocking Gavin to sleep in the hospital and holding him for the last time, and her blog posts about his final days. She had a choice: She could have melted into a private puddle of agony. She chose strength, the extreme kind. Just thinking of it will surely bolster others during hard times.
Out of bad can come good.
Kate and her husband did not hesitate to offer Gavin’s organs for donation. On the day he died, her 43rd birthday, Kate asked readers to participate in a project: Help someone out, share the message of Gavin’s story, pay it forward. She listed suggestions: Give old toys to a special needs classroom. Help a stranger unload groceries. Bring magazines to a local hospital for parents spending time there with a child. And many, many people took her up on her suggestion.
One person can change the world.
Gavin was so young, but his impact far surpassed his years. As Kate wrote in a post, ”If you didn’t know him or realize how he touched people’s lives, just look at the outpouring of comments and Facebook posts and blog posts about him. People have been inspired by him over the years—and continue to be inspired by him now—and I know in my heart, that, even in his death, that won’t change.”
When I was a pregnant 28-year old, I didn’t hesitate as my doctor offered a screening test for various genetic conditions. I figured it couldn’t hurt me or my baby, and that the information the test provided would most likely allow me to check a box off my mental list. I was hoping for reassurance that my child was and would be healthy, happy, and who I expected. As it happens, despite the fact that the prenatal tests suggested otherwise, our daughter was diagnosed with Down syndrome two hours after birth. Since that moment, I’ve spent a lot of time thinking about sticking out my arm for a blood draw eight years ago. In retrospect, I wish I had known how problematic my assumptions about prenatal testing were, so my hope now is to offer other women a chance to confront some myths surrounding prenatal testing:
Myth #1: Your doctor can tell you everything you need to know about prenatal testing.
Two hours after Penny was born, a pediatrician and a neonatologist told us that they suspected she had Down syndrome. I hardly heard their words, but later we received a packet of information that listed medical concerns for children with Down syndrome, and I read about her likelihood of developing celiac disease, childhood leukemia, intellectual delays, vision and hearing impairments. But the doctors couldn’t tell me much about what has proved to be far more important to our life as a family—Penny’s personality, the way she would fidget like her father and jump up and down when receiving a new book, just as I did when I was little. Doctors can provide medical information about the conditions that might be diagnosed through prenatal testing, but most doctors are unable to provide information about the social and emotional context for children with disabilities.
A study published in the American Journal of Medical Genetics demonstrated that doctors and genetic counselors value clinical information most when presenting a prenatal diagnosis, even though parents report valuing information that details the social context for Down syndrome. As numerous studies attest, what parents want and what doctors and counselors provide often differ. Expectant parents need more than medical knowledge when making decisions about their families.
Myth #2: The best thing for every pregnant woman is to pursue prenatal screening.
When I was pregnant with Marilee, my third child, I chose normal ultrasound exams and a fetal echocardiogram, but I declined all other prenatal tests. Because I had already given birth to one child with Down syndrome, there was a higher than usual chance that my other children could be born with Down syndrome, but I also felt confident that the testing we had pursued would give us all the information we needed in order to welcome her into the world.
The American College of Obstetricians and Gynecologists recommends that doctors offer prenatal screening tests to all pregnant women, regardless of age or family history. Once the offer has been made, the decision about what route to pursue is up to you. If you want the option of abortion in the case of a prenatal diagnosis, then you will probably choose screening which might lead to more invasive testing (an amniocentesis or corionic villa sampling). But if you don’t want the option of abortion, there are other factors to consider. Perhaps you would like this information so you can feel emotionally prepared. Perhaps you have other kids at home and might need to make different preparations if your baby might be in the hospital for a longer stay. Perhaps you are afraid that other people would put pressure on you to abort so you don’t want the information. Perhaps you suspect that this type of information would be difficult at any point but easier once the baby has been born.
Myth #3: Prenatal testing is just a guise for selective abortion.
Although at least 70% of American women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, and even more terminate with diagnoses like anencephaly, Edward’s syndrome, and Patau syndrome, prenatal testing can serve as a way to prepare well for the birth of a baby with a disability. Mona Patel, for instance, wrote about the ways prenatal testing that identified Down syndrome allowed her to prepare for her son’s birth: “Knowing about the diagnosis gave me time to learn. We spoke with a genetic counselor and explored books and internet resources. We contacted people who had children with Down syndrome and eventually attended a local support group meeting.” Many women who have chosen to continue their pregnancies after a prenatal diagnosis are able to find emotional and social support while also preparing on a practical level during the later months of pregnancy.
Myth #4: You can predict the type of child you will have.
Ethicist Stanley Hauerwas once said, “The only difference between parents of kids with [intellectual disabilities] and other parents is they find out a whole lot sooner they didn’t get the kid they wanted.”
Prenatal testing offers a false sense that knowing the chromosome count of a baby can tell us something positive or negative about who that child will be. But every life that comes into this world does so with both limitations and possibilities. Every kid will be a burden on his or her parent. And every kid, no matter their limitations, can be a blessing.
When Penny was born, I had to confront my own false assumptions about prenatal testing, and, more importantly, about the child I thought I wanted to have in our family. Now I know that more advanced prenatal testing could have given me a diagnosis and offered me statistical probabilities about the medical and social supports our daughter would need. But I also know that even the most advanced prenatal testing would have offered me very little to predict the sorrows and joys of life with this particular little girl in this particular family. There’s no test for how much love our hearts can hold.
