Yesterday, I read an article about a PhD candidate in New Zealand who will be looking into changing the way society thinks about disability. Titled “Reimagining Disability,” the research will explore disability pride and ableism (discrimination in favor of ”able-bodied” people) through a group of intellectually disabled adults.
“Having a disability is largely viewed as having a problem, when it shouldn’t be,” says Ingrid Jones. “It’s just part of the diversity of humanity. The reason we have disability oppression is because society views disability as a problem. Being ‘able’ is seen as the norm, when society is more diverse than that.”
All I could think was, AMEN.
To me, it didn’t matter that her research is taking place across the world, because the challenges people with disability face seem to be similar everywhere. It’s more intense in some places, of course; there are developing nations where children with special needs are kept hidden away in homes, and may be considered a “curse.” But the commonality all countries share, sadly, is that people with disabilities are often seen as defective, lesser human beings.
I know this firsthand from raising Max. He’s a super-cute kid (if I do say so myself), and a charming, happy one at that. Bright, too. But there have been many times in his life when people have expressed pity about him, because of his cerebral palsy. Or excluded him from programs. Or have only been able to see his disabilities, not his abilities (or possibilities).
Max’s biggest challenges aren’t the ones caused by his cerebral palsy—they’re the perceptions people have of him.
As disheartening as this can be, I have hope. Through blogging and social media, many parents are showing the world just how much our kids rock. We’re asking for people to respect our children, both in their language and in their attitudes. We’re pushing for inclusion, in school and out, as a growing number of programs and events crop up that offer the same. More and more nonprofits are spreading the good word, like AbilityPath and Easter Seals.Many states, along with the Supreme Court, have chosen to use the term “intellectual disability” in laws over the now defunct term “mental retardation.” Meanwhile, technology like speech apps are enabling our kids to better interact with the world.
It’s going to be a long haul. But research bit by bit, program by program, idea by idea, people can find ways to help society welcome and include those with disability. Person by person, parents can change minds, and help give our kids a better chance at being seen as equals in society.
It takes a village to raise a child, yes—but it also takes a village to cultivate respect for a child with special needs.
If you are an adult with disabilities, you are not allowed to have more than $2000 or you surrender your government benefits. I’ve known this fact for years, after I went to a rather depressing seminar about the future of benefits in our state. But there’s legislation in the works that would allow people with disabilities (and their families) to save up to $100,000 to pay for health care, education, transportation and other expenses, without losing Medicaid coverage. The act is called Achieving a Better Life Experience (ABLE), and a U.S. Senate hearing last week kicked off the bill’s progression through Congress.
Reports say that the bill is likely to pass in September, with hundreds of sponsors from both houses of Congress. Sara Wolff, 31, who has Down syndrome, testified before the Senate panel, noting how the ABLE Act could improve her life; per current laws, she is only allowed to earn up to $700 a month.
As she’s said, “Just because I have Down syndrome, that shouldn’t hold me back from achieving my full potential in life. I can work a full-time job, be a productive member of society, and pay taxes—but because of these outdated laws placed on individuals with disabilities, we hold people like me back in life.”
Gossip and entertainment sites were buzzing this week about fan sightings of Justin Bieber at Disneyland last Sunday, in a wheelchair, cutting lines. Fans shared social media photos, including the above, of the star. There was speculation that Justin did this to cut lines. There were other photos posted of him the next day, standing perfectly fine.
Let’s start with this: Celebrities do not need to “fake” disability because they can easily get preferential treatment at theme parks, and pretty much anywhere they go. Justin’s done a bunch of dubious stuff in recent years, but it just seems ludicrous to think he’d need to do this. TMZ reported that he was nursing a knee injury from basketball and only sat in the chair for a short time. They also noted that Bieber gets escorted in and out of the park, to avoid attracting a crowd.
Not that countless people haven’t tried over the years to pretend to be disabled. My husband knew someone, as a teen, who’d rent a wheelchair to cut lines at theme parks. Last May, the news broke that wealthy parents were hiring people with disabilities so they could bypass lines.
That abuse is one key reason Disney recently changed its policies for accommodating people with disabilities to a system that’s similar to Disney’s Fastpass one, in which a park attendant gives you a return time for a ride. So the second, and more key reason, this whole story can’t be true is that people in wheelchairs do not automatically get access to rides, or any additional leeway. Only wheelchair users who have behavioral or sensory issues or other disabilities might qualify for the Disability Access Service Card. But that wasn’t always the word being spread online. As The Wire said, “Everybody knows that Disneyland allows its disabled guests to cut the lines at any rides that can accommodate them, so, you know, congrats to Justin Bieber for FINALLY getting an advantage in life.”
Right. As if having a disability is ever an advantage. If you have a kid with special needs then you know what a constant uphill battle life can be.
The media is ready to jump on Justin Bieber for any move he makes, but it seems like he didn’t deserve this—and neither did people with disability. Bad reporting like this hurts kids like my son, because it spreads the misconception that people with disability “get away” with cutting lines. Some of them, like Max, dorequire accommodations at theme parks. He has cerebral palsy and can’t stand for long periods of times. He gets scared of crowds. I know of other kids with special needs whose bodies can’t properly regulate temperature, and so they can’t wait for long periods in heat.
Make no mistake: Accommodating our children isn’t special treatment—it’s leveling the playing field so they can enjoy parks in the same ways that other kids do.
If you walked by the JCPenney in New York City, you might notice something a little different in the store window display. Something amazingly different. The five mannequins reflect physical diversity. Modeled after five real people, they include a woman in a wheelchair, a man with dwarfism and a double-leg amputee, along with a plus-size woman and a 6-foot-one-inch man. The mannequins are part of the store’s “When it fits you feel it” campaign, and were specially made for the TODAY show’s Love Your Selfie series, as Today.com reports.
As the parent of a child with disability, I love this. Traditionally, initiatives in support of body image (especially from the fashion industry) have to do with plus-size women. It makes total, wonderful, awesome sense to celebrate the physiques of people with disabilities, too. The more others can see people with disabilities in mainstream settings, the more they will come to think of them as being mainstream. Too often, that’s still not the case.
Model inclusion is also happening more frequently, slowly but surely, in advertising. Nordstrom’s July catalog, reports ABC News, includes a man with a prosthetic leg showing off running shoes and model Jillian Mercado in a wheelchair modeling boots (she made headlines this spring for appearing in a Diesel ad campaign).
The mannequins are on display through August. I think they should go on tour!
A global wheelchair dancing competition recently finished in Beijing; the winners will head to the Asia Paralympic Games, which will be held in Korea in the October. It’ll be the first time wheelchair dance is a competition category in those games.
There were 116 contestants from eight countries at the competition including an 85-year-old woman, as reported on CCTV. Wheelchair dancing is a big-deal sport these days. If you have a child who uses a wheelchair, check into local classes, like the ones offered around the country by American DanceWheels instructors and The Dancing Wheels Company & School in Cleveland. Check out the video:
Competing is tough work; the dancers get blisters on their hands from gripping the chair’s wheels. The moves also take a whole lot of upper-body strength. But watching the video of the dancers in action in Beijing, all you see is their grace, technique and energy, along with the joy they take in their movement—exactly what any dancer aims to achieve.
For me, this is about great dancing, period. For some dancers, it’s much more. As one said, “The wheels are like my wings that help me realize my dreams and fly me to a bigger stage.”