Archives for May 2013

There ought to be a law…

…and now there is.

The State of Tennessee just passed a law making it a felony to knowingly abandon a person with an intellectual disability. Amid some fanfare, Gov. Jim Haslam signed “Lynn’s Law” into effect at city hall in Caryville, scene of an incident last year that led to the law.

Last summer, Lynn Cameron, a 19-year-old woman with an intellectual disability, was abandoned by her mother at a tavern in Caryville. The mother, Eva Cameron, said she was no longer able to care for her daughter because she had another child with special needs.

The Camerons are from Algonquin, Illinois, and Mrs. Cameron said she had been trying unsuccessfully for years to place her daughter in a group home.  She heard from a friend at church that Tennessee had better services for people with disabilities.

Don’t believe everything you hear

So she drove her daughter to Tennessee and planned to drop her off at a church, but instead left her at a bar in Caryville.  Mrs. Cameron had been misinformed about Tennessee, which has 7,000 people on waiting lists for state disability services.

Inadvertently, Mrs. Cameron had accomplished what needed to be done to get her daughter the care she needs. Tennessee refused to keep Lynn and a judge ordered that she be returned to Illinois, where officials decided she was in a state of crisis and was eligible for placement in a residential facility.

Not surprisingly, Mrs. Cameron’s actions drew widespread publicity and condemnation. How could a mother abandon her disabled child in that way? Lynn apparently was left with no identification and no money. She had a vocabulary of no more than 40 words.

News of her plight made headlines nationwide. Authorities in Tennessee tried to arrest her mother but found there was no law against what she did. Abandoning an adult, regardless of his or her mental capacity, was not against the law. And so now we have Lynn’s Law.

Can’t see the forest for the trees

Pardon me for stating the obvious, but this doesn’t solve the problem. Punishing a parent for giving up on a disabled child does not resolve the underlying issue. And that issue is that there aren’t enough services available for people like Lynn. If there were, we wouldn’t have mothers like Eva Cameron doing something the rest of us find unthinkable.

As she told the Chicago Tribune, she knows people don’t understand. But she couldn’t cope any longer with Lynn’s disabilities, escalating behavior problems and medical bills. And she’s not alone. There are 10,000 to 20,000 other parents in her same shoes in Illinois, where budget cutbacks have resulted in curtailed services for people with disabilities.

The Camerons’ story, or some version of it, has been repeated countless times throughout history. In ancient times, children who had disabilities were often abandoned in the woods and left to die.

In my family, my uncle Melrose, like so many others in the 20th century, were sent to live in isolated institutions because there was no other help for their families.

Surely we can do better than this for our most vulnerable citizens. Surely.

Getting real about people with disabilities

As a former journalist and AP correspondent (I call myself “former” even though I still feel Portrait of young handicapped pilot showing tumbs up at office desk.like I have ink in my veins), I am struck by how powerful the media is in framing issues and portraying people. A new entry on mental illness in the AP Stylebook, the journalist’s bible, makes that point very clear.

The new entry directs reporters not to mention a specific diagnosis – bipolar disorder, schizophrenia, or other disorder – unless it is germane to the story. This directive is in keeping with the general direction of AP style over the years.

The same instruction has been true for decades when identifying individuals of color. Their race is not to be mentioned unless it is relevant to the story.

Avoid stereotypes

Journalists are also advised against promoting stereotypes of people who have mental illnesses. They are to “avoid descriptions that connote pity,” and not use terms like insane, crazy, nuts or deranged.

The story on AP’s new directive in Disability Scoop, which bills itself as “the premier source for developmental disability news,” drew the following comment from reader Andrew Hidas:

“The fact that the AP style book is being updated in this fashion is but one more encouraging step on the road to recognizing the full humanity of people with disabilities. The arc of history is indeed bending in the right direction.”

Media on right path

In 2008, the AP updated its stylebook and eliminated the taboo term “mentally retarded.” The correct wording is now listed as “mentally disabled.”

These changes represent real progress in how the media frames people with disabilities. But we do have a distance to go.

If you read Special Olympics’ Ten Commandments on How to Communicate About People With Intellectual Disabilities, you’ll know why I say we’ve got more work to do.

The Ten Commandments urge communicators to refrain from stereotypes. For example, people with intellectual disabilities should not be described as eternal children. Instead, they should be portrayed in situations where they are interacting with all kinds of people and in all kinds of normal everyday situations – such as shopping at the mall, having coffee with friends or at work.

I’m glad to see my former employer The Associated Press moving in the right direction. Since the AP is one of the world’s largest news organizations, it can only bode well for all people who have some form of disability. I only wish that I and my colleagues had been more enlightened during our days with this influential wire service.

At least the pay is good

Will the exploitation of people with disabilities never end? I’ll admit I’m naive. But I would hope that by the year 2013, people with mental or physical limitations would be regarded with more respect. The latest news indicates otherwise.

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It has come to light that so-called “guides” with special needs are being hired by wealthy families to escort them at Walt Disney World. Because the guides are disabled, they can move to the front of long lines for rides, allowing their client families to avoid waits up to two and a half hours.

The guides are hired through a special tour company, which charges $130 an hour for their services.  At the very least, I hope the guides are paid a good chunk of that amount, but I wouldn’t count on it.

This is nothing new

Of course, this scenario is nothing new. People with disabilities have been used by others for centuries. Only 100 years ago, William Henry Johnson, AKA Zip the Pinhead, was an attraction at a circus freak show in the New York region.

Zip had an odd-shaped head and was believed to have microcephaly, a condition in which the skull doesn’t grow large enough for the brain to fully develop. People with microcephaly often have intellectual disabilities; however, there was some doubt that Johnson had a low IQ.

Zip was displayed in a cage and billed as “the missing link.” It was the only way this impoverished, uneducated man could earn a living.

Free or cheap labor

Even before Zip made his debut, people with intellectual disabilities and mental illnesses were displayed for public entertainment in hospitals and in town squares.

In the 20th century, it was common for people with disabilities to be put to work doing labor at state-run institutions.  They worked without pay on the farming and dairy operations that fed those who lived in the facilities. And they worked in the laundry and food service sections.

In Iowa, a recent court case ended with $50,000 in damages being awarded to each of 32 men with intellectual disabilities. The men had worked in what were described as slave conditions in a turkey processing plant and paid 41 cents an hour. They lived in rodent-infested bunkhouses and were subjected to physical abuse.

Is diversity just a trendy thing?

For at least two decades, it has been in vogue to promote diversity. At universities, government agencies and private sector companies, the push is on to hire and promote a wide range of people. We teach our children to be accepting and tolerant of others, no matter how different they might be.

I like to think the campaign for diversity isn’t just for people of different racial, ethnic and religious backgrounds.  By all means, it should include those with disabilities.

From the latest news, it looks like we still have a long way to go in not only accepting, but embracing and honoring people who have physical and intellectual disabilities.

Just say ‘hi’ and make someone’s day

Family AffectionA few days ago, I was in a hotel lobby and walked by an older woman sitting in a wheelchair. She had a far-away look in her eyes that told me she was not very aware of her surroundings.

I said “hello” to her, as I would to anyone I passed by. She seemed somewhat taken aback and it took a moment for her to look in my direction and greet me. I thought it likely that it was rare for her to be acknowledged by strangers.

I have often thought that the elderly have much in common with people who have disabilities. They are “different,” and have special needs. So we send them to nursing homes and assisted living facilities where they live out their days in isolation.

The same is true for people who are poor. We sit in our cars at traffic lights and ignore the homeless person standing on the corner, wishing they would go to the shelter and stop asking for money.

More visibility

For many decades, we sent people with disabilities to live in isolated institutions in rural areas. Fortunately, that trend has reversed and most states are moving folks into home-like settings in residential neighborhoods.

As a result, it’s becoming more common to see people with disabilities in everyday situations. There’s the sacker with Down Syndrome at the grocery store. There’s the little boy with cerebral palsy moving haltingly down the aisle to his seat on an airplane. There’s the non-ambulatory girl being carried by her mother to the hotel dining room.

Even though people with disabilities are more visible, many people are uncertain as to how to react to them.  I noticed this when I would take Uncle Melrose, who had an intellectual disability, to McDonald’s or to other public places. Many folks – children especially — stared at his twisted back and small head.

But Melrose was delighted to be around people and in the mainstream of life. He waved at the people he passed and reveled in their company.

Expecting to be ignored

J. David Smith, who teaches in the Department of Specialized Education Services at the University of North Carolina at Greensboro, writes about his experiences interacting with people who live in group homes.

In Ignored, Shunned, and Invisible: How the Label “Retarded” has Denied Freedom and Dignity to Millions, Smith writes that the people he encountered seemed to expect to be ignored.

“As I approached the front entrance (of the home), I met the gaze of people sitting on the porch and standing on the lawn and around the doorway. As I have found in similar places, they appeared to be surprised, if not startled, when I spoke to them. They seemed to expect that they would be unnoticed, not seen, to be socially invisible…

“The real problem of being African American, or poor, or old, or having an intellectual disability in the United States lies in not being seen as an individual human being.”

No one likes to be ignored, no matter who we are or what condition we’re in. So say “hello” to the next elderly or poor or disabled person you run across. Regardless of whether they respond or not, you’ll make their day.

Separate no more

Every Brookwood citizens has a bicycle for rides through the neighborhood and bike races.

Every Brookwood citizens has a bicycle for rides through the neighborhood and bike races.

It used to be that people who had disabilities often lived a Boo Radley kind of existence – hidden away either in their homes or separated from society in institutions.

The general consensus throughout much of history was that people with disabilities needed to be protected from the general public and vice versa. Many families, who believed they were being punished for some sin, felt shame for having a disabled member.

This mindset explains why so many institutions were built in rural communities in the 20th century. Better to put these so-called “defectives” out of sight.

More progressive attitudes

Thankfully, this belief system has given way to more progressive attitudes. Today, children with disabilities of all kinds attend public school with other children their age. Adults with disabilities have jobs in highly visible places. Members of the disabled community attend sporting events, movies and go out to eat at restaurants.

This kind of inclusiveness is at the heart of the Brookwood Community near Houston.  As reported last week in this space, Brookwood is a community where people with intellectual disabilities, live, work, worship and play.  There are 105 residents and 83 others in the day program who work in the greenhouse, ceramics shops, the restaurant or at other spots on the campus.

Brookwood staff are intentional about making sure their citizens are involved in the surrounding area. Brookwood citizens team with nonprofits and churches for various activities, including game nights, bicycle races and worship services.

They go to Houston Astros and Rockets games, bowling, fishing, to restaurants, movies, libraries and shopping.

An open community

In addition, more than 70,000 people tour Brookwood every year, giving folks the chance to rub shoulders with the citizens as they work and go about their daily living. Visitors also shop in the Brookwood gift shop, which sells items made by the citizens.

The community has a beautiful chapel that is rented out for weddings, exposing a younger adult population to the joys of being around people with intellectual disabilities.

I’m thankful that the world has changed so that places like Brookwood and group homes in residential neighborhoods can exist. I’m thankful, too, that the institutional movement in this country has come to a halt.

For the sake of people like my Uncle Melrose, who lived in institutions and was shut away from society for almost 60 years, it’s a welcome turn of events.