Disability Futures

Feb. 28, 2005 -- At last night's Academy Awards ceremonies, Clint Eastwood's Million Dollar Baby swept the awards, winning for Best Actress, Best Supporting Actor, Best Director and, finally, Best Picture. Alejandro Amenabar's The Sea Inside was voted Best Foreign Film. The message from the Motion Picture Academy voters? the best "cripple" is a dead "cripple." Both films centered on sympathetic portrayals of the killing of quadriplegics.

"This is a clear statement on the Hollywood industry's opinion of people with disabilities," says Diane Coleman, president of Not Dead Yet, a national disability rights group opposed to legalization of assisted suicide and euthanasia. "They grudgingly made accessibility changes when Chris Reeve complained about accessibility at the Kodak Theater, where the Oscar event is held. They love us if we're begging for a cure or begging to die. Once we start talking about our rights, we see their interest and sympathy disappear."

There is no question this is a crock of shit because, of all the uncertainty that exists in the world, there is at least one thing I know with a deep sense of conviction — people who use wheelchairs don’t actually want to kill themselves.

Admittedly, I have a bit of specialized knowledge about this sort of thing. I was born with a rare neuromuscular disease, and I’ve used a wheelchair my entire life. My condition affects the muscles throughout the body, slowly creating greater and greater paralysis. I went from an adolescent boy who double-fisted most meals to a man approaching middle age who has eaten through a feeding tube for the past twenty-two years. Most recently, I had a tracheostomy placed and began using a ventilator to support my respiratory muscles.

And life still goes on.

It actually goes on in quite a busy and fulfilling way. After being mainstreamed into public school in the fourth grade, I went on to earn two degrees from a major California university, rushing a fraternity and participating in the honors program. Then I graduated from law school. And then I became a member of the State Bar of California. Today, I work with people from around the world as a freelance writer. I make some people laugh, I piss others off and I worry about the grey hair in my goatee. I have wonderful friendships and an awesome family. And from personal experience, I can assure you that Helen Hunt does not portray the only woman in the world who has ever made love with a man who uses a wheelchair.

Jana Serge remembers her father pushing her wheelchair into a men’s room in the late 1970s. “Close your eyes,” he would say, as he quickly wheeled her toward the stalls.

Today, a father who took his disabled daughter into a men’s room in a public building in North Carolina technically would run afoul of the state’s so-called “bathroom bill,” which requires that people over the age of 7 use the bathroom that matches the sex on their birth certificates. While the law is aimed at transgender people, disability advocates worry that it also could affect people with disabilities who, because they need assistance from an opposite sex caregiver or parent, also use opposite sex bathrooms.

Parents like Jennifer Eldredge-Bird of Miami, whose sons, ages 11 and 15, have autism, say their children’s disabilities require that the parent and child stay together at all times.

“They’re not very high-functioning,” she said. “If I’m going in the ladies’ room, they’re going in the ladies’ room.”

Sharisse Tracey, a mother of four in West Point, N.Y., said sending her 8-year-old, who has autism, into a shared men’s room alone is out of the question. “I wouldn’t send him in anywhere alone, let alone a men’s room,” she said.

For Laura Rossi and her 13-year-old twins, using public bathrooms became more challenging as her children have gotten older. Her son, Matt, has Tourette syndrome, accompanied by significant impairment of fine motor and social skills.

“When the twins were little and cute, there were all these smiles and nodding heads,” said Ms. Rossi, a public relations professional who lives in Jamestown, R.I.

But as they got older, she began to hear criticism when she took them into the women’s room. “Matt’s needs are invisible, and he got tall very quickly,” she said. “If there’s not a family bathroom, we got a lot of looks and comments, you know, meant for you to hear but not really ‘to’ you — like ‘this is not the boys’ room.’”

With restroom access a topic of national debate, many people with disabilities and their families are hoping that conversation extends to expanding access to public facilities for every person.

In summer 2015, the Paul K. Longmore Institute on Disability at San Francisco State University mounted an interactive, multi-media exhibit “Patient No More: People with Disabilities Securing Civil Rights". We faced several daunting challenges that ultimately made our installation like no other. In fact, we have been sharing our process with museum professionals and continue to learn as we go.

First, the story itself: on April 5, 1977, more than 100 Americans with and without disabilities began a twenty-six day occupation of San Francisco’s Federal Building to insist on getting civil rights. Four years earlier, Section 504 of the Rehabilitation Act of 1973 made it illegal for any facilities or programs funded by the national government to discriminate against disabled people. One official’s signature stood in the way of the law taking effect. After four years of waiting, a coalition made up people with different disabilities launched protests across the country. San Francisco’s occupation proved the most involved and successful. In fact, thanks to support from local community groups like the Black Panther Party, Glide Memorial Church, the Gay Men’s Butterfly Brigade, as well as local and national politicians, it remains the longest unarmed take-over of a federal building in US history. The occupation itself and subsequent victory gave birth to a national disability rights movement and helped pave the way for passing Americans with Disabilities Act (ADA) thirteen years later in 1990.

There is a big spoiler in here. There is a big spoiler in here. There is a big SPOILER in here!

Ok, now that’s out of the way, let’s continue.

I’m also not sure that this clever little paradox that GoT has set up was meant to be a statement on disability (or at least not solely), but it is such a statement on disability. Given how passive Hodor’s character has been I wondered if Hodor’s final end wouldn’t come while Bran was controlling his body, but Hodor’s last and most important sacrifice is done fully aware—his eyes are clear. And there it is. Hodor’s greatest deed leads to his disability, and his disability leads him to his greatest deed. His intellectual disability is a means to his heroicism. He’s not a hero despite his disability and he doesn’t overcome his disability. His heroicism and his disability are both essential parts of his whole. Yin and yang, peanut butter and jelly, left and right! Ok I don’t want to overwhelm you with deep metaphors, I’ll stop.

Cheers to Game of Thrones for managing (again) for representing disability without resorting to pity and inspiration tropes. Except I’m still grieving over Hodor actually dying. That sucked.

The US Department of Justice just released final regulations regarding the implementation of the American for Disabilities Act. “These rules clarify and refine issues that have arisen over the past 20 years and contain new and updated requirements.”

The regulations should be shared with ALL schools and workplaces when requesting accommodations.

These clarifications are much needed and address:

•  reduced requirement to re-test if previously qualified for accommodations (prior and outside testing should be generally accepted)
•  students do not need to fail to be provided with accommodations – testing should reflect aptitude
•  students previously qualifying for accommodations should be provided with accommodations for college, graduate school (MCAT, LSAT), licensing, and trade examinations
•  accommodations should be provided in a timely manner
•  individuals receiving accommodations should not be ‘flagged’

Fortunately, the world is changing — with implementations like Best Buddies, Rosa’s Law and the Americans With Disabilities Act. But a couple of things are keeping America from fully including and involving people with disabilities into everyday life naturally: society’s colloquial language and the style of disability advocacy.

Thankfully, Spread the Word to End the Word and similar campaigns have attempted to mark words like “retarded” as taboo (however, 56 percent of Americans don’t think it’s offensive to call themselves the r-word, and 38 percent don’t find a problem in calling their friends it either). But left in their wake are “boom-boom,” “mental” and “slow.” Of course, any well-intentioned person can forget and succumb to using these words — but if we ever want to see full integration, we have to let them go.

Some say that nitpicking words like “crazy” and “lame” will just start another treating people with respect battle, and that there is no easy way to eliminate them. But before deeming this challenge “too hard,” think about how difficult it is for 48.9 million Americans to not only have a disability, but to be reminded of it in everyday conversations.

Another problem arises in the fact that two-thirds of people claim to be uncomfortable talking to people with disabilities because they don’t know how to act politely around them. This awkward silence is too often filled with well-meaning (yet meaningless) statements like “You’re God’s special gift.” But again, people who are uncomfortable around those with disabilities aren’t usually out to discriminate. However, with the rise of politicians like Donald Drumpf, who “mocked” a reporter with arthrogryposis, more citizens are following the path to discriminatory speech.

Driverless cars are on the horizon. That much is clear.

We’ve heard from businesses, engineers, and politicians about how autonomous vehicles could change day-to-day life for all of us.

How might driverless cars affect the lives of people with disabilities?

Cathy McAdam is an assistive technology coordinator at the Michigan Disability Rights Coalition.

McAdam is blind, and she’s intimately familiar with the challenges that many people with disabilities face just trying to get around.

“It is challenging, and sometimes the distance makes it even more so,” McAdam says. “Bus transportation has gotten a little bit better with the Americans With Disabilities Act, but it’s still a quite a challenge, and sometimes you can use a big chunk of the day just getting somewhere by bus.”