A little over a year ago, our younger son began to limp. We didn’t worry too much at first, as our family doctor told us it was most likely a side effect of a viral infection. A month later, his limp was worse and my wife knew something wasn’t right. She pressed for appointments and x-rays while we began preparing ourselves for worst-case scenarios.
Last January, Luke was diagnosed with Legg-Calve-Perthes disease. The blood flow to his hip joint had been interrupted, which made the ball of his femur go soft rather than growing stronger. Perthes is relatively rare, and Luke has it in both hips, which is even rarer.
His particular path through the labyrinth of the disease has not been easy. He is not supposed to run, jump, bounce, hop, skip, climb stairs, roughhouse with his older brother, trudge through snow, or generally do anything that six-year old boys love to do. He has needed a wheelchair in school and for extended trips, and at times he has been confined to a brace that pins his ankles about two feet apart to help the femur settle in to the hip joint. He’s had to sleep in his uncomfortable brace, too, which seems like torture.
Luke is a trooper. He gets grouchy and sad, and is sometimes frustrated that he has to sit still and watch his first-grade classmates tear around the playground during recess. But he’s adjusted to the limitations, has learned how to swim, and has become a very good reader. His brother has developed empathy for him, and even traded beds so that Luke could be more comfortable. Our house marches on.
Living with a disability in the family has taught us a lot. We have slowed down, relied on our family, friends and neighbours for their incredible generosity, and have become experts at card games like Frog Juice and Alien Hotshots. We have also come to deeply appreciate the American approach to disability rights.
Disability rights in the United States
The United States is rarely hailed as a model for anything related to health care policy. The Senate gave the country an international black eye in December when it failed to reach a two-thirds majority required to ratify a United Nations treaty preventing discrimination against people with disabilities. But they didn’t vote that way out of immoveable hostility toward protecting disabled people in this country. In fact, as supporters pointed out, the UN treaty was itself modelled on the 1990 Americans with Disabilities Act.
|Florida mother on importance
of education and healthcare
The Americans with Disabilities Act is a mammoth piece of legislation with provisions for how government and private entities deal with disabilities in a wide variety of contexts. And while it is the best-known one, it is not the only important law on the books.
The Individuals with Disabilities Education Act was also passed in 1990, more than a decade and a half after the landmark 1973 Rehabilitation Act. In fact, American laws, policies, and protections are so extensive they have inspired a lengthy guidebook issued by the Disability Rights Section of the US Department of Justice’s Civil Rights Division. It is also worth pausing for a moment to note that the Department of Justice has a Disability Rights Section in the first place.
The United States is hardly a paradise for disabled people. Many people with disabilities still do not get the treatment they need, nor the support or understanding they deserve. But these laws and policies can make a big difference. In Luke’s case, they mattered in at least three ways.
Applying the laws
First, because Luke can’t walk long distances, we received handicapped placards for our cars that enable us to park in spots close to the door of his school, our church, the supermarket, the swimming pool, and other places we need to go. Never again will we complain that there are too many of these spaces, because there have been times when they were all filled.
It’s not the end of the world to wheel him across a busy parking lot in the dark and snow-bound Vermont winter, but it’s no fun either. And it is far better to park close enough so that Luke can manage a very short walk to save our backs from the constant hoisting of his 40-pound wheelchair in and out of our car. Because of the Americans with Disabilities Act’s construction requirements, we can also count on the majority of buildings we enter to be wheelchair accessible.
Second, at school, Luke’s principal, teacher, nurse, and physical therapist immediately worked with us to coordinate a federally-mandated 504 plan (named after the relevant section of the 1973 Rehabilitation Act) to accommodate his limited mobility. They reorganised his classroom and elevated his desk to fit a wheelchair.
They also assigned him an aide to help with tricky transitions and moments in his daily routine (for example, during lunchtimes he could not balance his tray and negotiate the busy cafeteria space swarming with dozens of little kids). They did everything possible to help him feel like an equal participant in school, including providing him remote-controlled cars that he could use during recess to have fun and draw in other kids so he didn’t feel so isolated.
Third, we have also noticed vast differences in accessibility when we travel. We took our kids to Washington, DC last spring and discovered that it is an extremely wheelchair-friendly city. Even the White House has elevators. On a more prosaic level, the downtown sidewalk curb cuts are seamless. This is a big deal if you are an independent and strong-willed little boy. Luke has toppled over at times, and it hurts more than his pride.
By contrast, when visiting Montreal last summer, we had to yo-yo him in and out of his chair, particularly on the metro. Because I study West European politics for a living, I have noticed the virtual impossibility of navigating Luke through many European transportation systems, apartment buildings, and public accommodations. Europe has extensive protections and encouragements for disabled people in the workplace, but far fewer that facilitate daily tasks for anyone with mobility limitations.
Evolving American public culture toward disabled people
Beyond the effects of American public policy, there has also been a positive evolution in American public culture. Disability rights organisations have grown in number and influence, and are doing their best to ensure that the country’s extensive laws are enforced. Disabled characters are increasingly common on popular television shows, such as Breaking Bad, Friday Night Lights, and Glee. Many Americans – from government officials, to school administrators, to bus drivers, to store clerks, and beyond – are coming to understand that disabilities are simply a part of life and need to be accommodated.
It is true that reactions to a little boy in a wheelchair are vastly more sympathetic than those toward people with different kinds of disabilities, and that prejudice, incomprehension, and resistance are still entrenched in society at large. Physical impairments tend to be better accommodated than mental ones, and FBI statistics show that disabled people remain the targets of hate crimes. At the same time, attitudes toward people with disabilities have shifted in the United States over the past two decades. This has facilitated a greater willingness to apply the existing legal provisions in practice – at least on average, if not in every single instance.
Luke has played the hand he has been dealt graciously and patiently. He will almost certainly grow out of his disability within the next two years and will no longer need the support systems offered by our family, friends, and government. But while he is in the thick of it, we are deeply grateful for the benefits from all three sources.
People everywhere can usually count on help from family and friends, but Americans can count on more support from their government than is available in many other countries. The American approach to disability rights is progressive and inclusive, two words not often associated with health problems and American public policy. On behalf of Luke, I’d like to thank everyone who has fought for these rights, and everyone who continues to advocate for people with disabilities.
Erik Bleich is professor of Political Science and Director of International Politics and Economics at Middlebury College and is the author of The Freedom to Be Racist? How the United States and Europe Struggle to Preserve Freedom and Combat Racism, published by Oxford University Press.
Follow him on Twitter: @ErikBleich1