GUEST BLOG: Do Labels Hurt or Help Our Children? You Be the Judge

Parents of children with invisible, or hidden, disabilities often struggle with many aspects of parenting. Not only do they have to maneuver through medical, educational and family situations (usually with no prior experience), but they also ponder the question of whether to label or not to label. If the disability is severe enough, a label seems like the kind thing to do. A title explains why Johnny can't read, can't sit still, can't do math and so on. It affords children the help that they need to succeed.

These words can open the doors to rights through the ADA (Americans with Disabilities Act) and Civil Rights Section 504. A diagnostic code, or category, allows insurance agencies to authorize (or not) payment for treatment. One is often backed into the corner and rendered helpless without all of these things.

One worries whether labeling Johnny as bipolar, ADHD or schizophrenic will create more stigma. They wonder if someday Johnny will outgrow this.

In an ideal world, people would recognize that Johnny might not be able to read, but he can work circles around kids in the math class, dance and sing and paint masterpieces.

Teachers would be able to teach to small groups of children with all kind of skill levels; grandparents would love every grandchild the same; parents would have a magic wand to wave over their child and make him or her absolutely capable in every category, doctors would have a magic solution to every mental health problem.

Until we get our magic wands, my wish is for parents to feel confident that they are doing the best that they can, using the tools that are available in hopes that tomorrow will be a better day. Our best is all we have to give.

Guest blogger today is Rebecca Randall, a family member who volunteers as facilitator for the Epilepsy Support Group that meets, 6:30 p.m., on the 4th Thursday of the month at the OSU/COTC Warner Library. Becky is the mother of two adult daughters, and was a longtime volunteer with MHA, facilitating a CHADD (Children and Adults with Attention Deficit Disorder) support group that met for 11 years in Newark. Becky is also former Coordinator of the Pathways Crisis Hotline and Information Center and a former Crisis Response Specialist. 

The 20th Anniversary of ADA

This week, we celebrate the 20th Anniversary of the Americans with Disabilities Act (ADA).The ADA is a broad civil rights law designed to provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities. Like the Civil Rights Act of 1964 that prohibits discrimination on the basis of race, color, religion, national origin, and gender, the ADA seeks to ensure equal opportunity for people with disabilities. It does not guarantee equal results, establish quotas, or require preferences favoring individuals with disabilities over those without disabilities.

When people think about the ADA, they think about removal of physical barriers with ramps and curb cuts. In its first twenty years, the ADA has made advances in starting to remove these physical obstacles. After twenty years, we have still not achieved even the federally mandated physical accommodations. Now, as we face the future, we need to eliminate other, more pervasive barriers-the stigma and discrimination that prevent social integration.

Has the ADA eliminated discrimination against individuals with disabilities? No. It has provided a valuable tool for responding to some forms of discrimination. There are many who opposed the ADA, just as there are still those who oppose the Civil Rights Act of 1964.

I have a “non-visible” disability, which makes it possible for me to “pass” in many situations, but, despite the passage of the ADA, in these last two decades, I have experienced discrimination in employment, healthcare and other areas of my life.

I am a person who experiences severe and persistent mental illness. I will not be cured. Although I am an advocate for recovery, I am not “in recovery” from my brain. I cannot abstain from “being bipolar“, as one abstains from substance addiction behaviors. I am not defined by my illness, but it is a prism, through which I experience the world. This is a fundamental part of who I am, as much as my ethnic heritage. It is a biologically-based disease, like diabetes. I did not survive it, as some survive breast cancer. If I had breast cancer, I would receive substantially better health care and support services.

Most people who experience mental illness are afraid to publicly disclose their illness. Stigma keeps them “closeted” for fear of rejection by family and friends, isolation or firing at their workplace, and discrimination in participating in politics, recreation, housing, religion or in self-determination. Despite civil rights legislation and the public disclosures of many famous people who experience mental illness, this discrimination is commonplace.

Today, we celebrate the civil rights landmark of the ADA, but it is only the first step in achieving true equality. For more information, go to http://www.ada.gov/ for the most comprehensive referral site for information on all aspects of the ADA.

--Kristen Frame
Compeer Coordinator

PORTION DISTORTION, part 3

Have you ever noticed antique dishware and the like at flea markets? And how tiny they are compared to today's dishware? Those itty bitty juice glasses represent portions of the past.

Our cultural perception of what a "portion" is has become a, um, big problem. A study of 52 famous paintings of the Last Supper shows that plate size--and portion size--has gradually grown over the last 1000 years. They measured how big the plates were compared to the average head size in the painting. Here's the article.

On-line I found (but didn't buy) a portion control plate designed by the "Portion Doctor." It's cute: half the plate is mapped out for veggies, a quarter (a serving about the size of a deck of cards) is designated for meat, beans, tofu, cheese, or other protein source, and the other quarter is for carbs. But grandma's plates, which were closer to the size of what's now a dessert plate, work fine.

Reality check: I'm talking about my grandma's plates. I'm a grandma myself now, but my plates are *way* bigger than my head. OK, that's disturbing.

--Judith Allee
Parent Support Coordinator

PORTION DISTORTION, part 2

I have to work at eating 5 to 8 servings of fruit and veggies a day. Some days I get 1 or 2. Occasionally, none. However, due to portion distortion, 5 to 8 servings isn't as much as it sounds. A couple of pieces of fresh fruit in the morning. (Or one large banana, which counts as 2 servings.) I generally pile half my lunch plate with veggies; that's about 3 servings right there. Add eight ounces of V-8 with dinner: bingo, I'm up to 7 servings (4 oz. per V-8 serving).

It doesn't happen, though, unless I plan for it. And it won't happen at all on a dollar drive-through menu or at the snack machine. I'm finding, though, that veggies cost less than fast food, and, believe it or not, I've come to enjoy them more. Honest!

Focusing on eating *enough* fruit and veggies keeps me from awakening my rebellious inner-adolescent, who wants to feed my face with both hands if I focus too much on *not* eating too much junk food. Heaven forbid if I even whisper the word d-i-e-t. Shhh.

--Judith Allee
Parent Support Coordinator

PORTION DISTORTION, part 1

Here's a fun, surprising and quiz in pictures about the portion distortion that has given Americans the dubious distinction of being the fattest country in the world.

I have the goal of eating 5 to 8 servings of fruit and veggies every day. The hidden camera in the office microwave can attest to the fact that I'm the only one here nuking peas and broccoli and the like for lunch. Today I put a whole baby squash (from the Friday afternoon Farmers' Market in downtown Newark) in there for two or three minutes and ate it with salsa and hummus. It was lovely.

But whenever anyone wrinkles his or her nose and says, "What's that smell?" they always seem to ask me first. It's a small price to pay for a healthier me.

--Judith Allee
Parent Support Coordinator

Stay Positive

I set myself the challenge of writing about each of the 10 Tools on the LiveYourLifeWell.org site.  These are research-based strategies for maintaining and improving your mental health and they seemed like something we should be talking about.

The first one "Connect with Others" is pretty straightforward and something I have written about several times on this blog, but Number Two, "Stay Positive" is a real challenge.

Anyone who knows me would laugh at the idea of me taking on this topic.  In a world of glass-half-full and glass-half-empty people, I am left looking for the glass.

It's no use my pretending to be a positive person, but I can write about someone who was.

But first, a joke:

This Anglican minister was on vacation in Ireland.  It was a foggy day and he was driving one one of the twisty-turny country roads that inspire poetry and accidents when he felt a bump.  He stopped the car and got out to discover that he had struck a rabbit.  The minister was beside himself for killing one of God's creatures when this priest came walking by.

"Father," said the minister.  "What's to be done, I've killed this poor, defenseless animal."

"Oh have you know," said the priest.  "Let's have a look."

The priest bends down over the body and after a careful look, pulls a small vial from inside his coat and sprinkles a few drops over the bunny.  A few seconds later, the animal leaps to its feat and scampers away.

"Oh father," said the minister.  "I had always heard about the miraculous properties of the Holy Water, but I wouldn't have believed it if I hadn't seen it myself."

"It's not Holy Water," said the priest.  "It's hare restorer."

It's appropriate to open with a joke because that's what he would have done.  He lived to tell his stories and he told them with the practiced skill of a life-long performer.  It's many years since I last heard Bobby tell this story and I can still hear his delicate Scottish accent ("scotch is liquid") and the rhythm of his razor-sharp timing.

For five decades, Bobby worked in the retail food business.  When he started, selling provisions was a much different trade than it is today.  When he began as an apprentice, customers came to the counter with a list and the grocer would pull their order from the shelves.  In a set-up like that, the grocer really got to know his customers.  He would know what they liked and didn't like and could recommend new items.  This was knowledge gained not from a print-out based on barcode scanning, but from real conversations.

After emigrating to Canada following his WW I service, Bobby again took up the food business and was eventually able to open his own shop where he specialized in cheese and other gourmet items.  The Cheese Shoppe was the place to go for lemon squash concentrate, real orange marmelade and Toblerone chocolate. And for the more adventuresome there were tinned oysters, jars of capers and chocolate covered ants.

Over the years Bobby built a loyal customer base.  People came from all over to give him their business and he always seemed to know each of them by name.  And if you were a first time customer, Bobby had a way of making you feel, by the time you left, as if you had known him your whole life.

He was justifiably proud of the many packages he sent overseas during World War II.

There is a story, and I'm no longer certain I remember the details correctly, of Bobby sending a package to my Uncle George who was a POW in Germany.  The package was alleged to have contained some whiskey, although I am not certain how it would have escaped notice.  In any event, it was sent by a Mr. J.B. Corn, as in John Barleycorn.  Bobby always talked about getting a thank-you note from my Uncle addressed to Mr. Corn.

They did a thriving business in gift packages for many, many years.  One of my clearest memories is of the walls of the store being piled high with stacks of their rich burgundy colored boxes waiting patiently to be filled.  These stacks rose from the tops of every shelf right up to the ceiling.  (I was never clear how they could get even one down without setting off a Jenga-like chain reaction.)

Once filled with an assortment of cheeses and crackers, bacon and jams, those packages would end up in some pretty remarkable places.  Bobby was proud of serving people like President Nixon, the Kennedys of Massachusetts and even the great Broadway impresario Flo Ziegfeld.

And like Ziegfeld, Bobby knew a thing or two about putting on a good show.  He was the absolute master of his domain and six days a week he would put that show for anyone and everyone who walked through his doors.

With his white butcher's apron, he would buzz back and forth from the counter to the cheese cooler, from the cash to the front door.  He would welcome each of his customers, help them with their selections, offer them some samples of this, or that cheese, tally up their bill by hand on the edge of a sheet of butcher paper that he would then use to wrap their purchases.  And all the while, he was either telling one of his stories, or whistling, or humming, or trading remarks with other customers, or staff, or both.

To really appreciate what a positive force Bobby was, you have to understand that being an immigrant business owner in Montreal during the 20th century meant that you primarily did business with your own people.  The French with the French, the Greeks with the Greeks and the Scottish with the English.  Though founded by the French, Montreal's commercial pulse was controlled for more than a hundred years by the English.

Though never a comfortable relationship, beginning about WW II, the French speaking majority in Quebec began to agitate for greater self-determination and an increased importance was placed on French as the language of  the majority.  Against this backdrop of increasing cultural sovereignty, Bobby greeted everyone who came through his door the same way--as a friend he hadn't yet met.

He would often tell the story of a French-speaking couple who came into the store and asked him, "Parlez-vous francais? (Do you speak French?)"  To which he responded, "Non, parlez-vous ecossais?  (Do you speak Scottish?)"  Everyone had a laugh and then they transacted their business in English.

Having a laugh was important.  After he retired, which took a couple of attempts before it actually stuck, Bobby would love nothing more than to go to the neighborhood bank dressed as he always was in his shirt and tie and grey flannel slacks and pass his bank book to the teller.  She would open it and see it contained a larger than life plastic cockroach, or ant, or whatever he happened to have on him at the time.  The teller's expression of surprise meant everything to him.  It would start a conversation and before you knew it, other tellers who had also been "bugged" by Bobby would come over and they would all have a laugh.

As I think I have mentioned elsewhere, he would do the same sort of thing at restaurants where he would try and get a new waiter in trouble by "discovering" a fly in his soup.  (The old jokes never go out of style.)

I can remember him telling me about meeting other seniors in his apartment building and he commented on their sour expressions.  He said, "They must have been business men, because they looked so unhappy."

It was Confucius who said, "Find a job you love and you'll never work a day in your life."

It's true, Bobby was the most positive, happiest unemployed business man I ever knew.

--Graham Campbell
Associate Director

Always Learning

Twice yesterday I toured the Licking County Family YMCA with parents who graduated over the last few years from our Getting Ahead classes (for parents in or near poverty). We had a little reunion and the tour was part of it.

I've been a Y member for a couple of years and didn't expect to learn anything. However, between all the new construction at the Y, the things I had forgotten, and the things I never knew to begin with, the tour was surprisingly informative even for me. For example, if you are a Y member, did you know you could borrow not only basketballs but also rackets for racquetball or wallyball while you are there?

I already knew that you could get free childcare for 90 minutes so you can work out or take a class--my grandson has a blast in the Rainbow Room. But I didn't know you could make reservations up to 2 weeks ahead of time. How about that?

To apply for a scholarship, you simply fill out a form and bring in proof of income--two most-recent pay stubs, tax return and verification of any other income. (Bring copies, not originals, because the Y can't make copies for you.)

So why would the MHA Parent Support Coordinator (me) take families on a tour of the YMCA? As part of a Community Impact grant from United Way, I encourage families to eat healthier and become more active, so the Y tour was one way to encourage families to consider applying for a scholarship.

We also had a short program about adding more fruit and veggies to your family's diet--and how to get your kids to eat them. Kayla Hughes, who teaches nutrition for the OSU Cooperative Extension Office, explained that it can take up to 15 times of trying a new food for the taste to become familiar to the child. Until it tastes familiar, kids don't really know if they like it or not. So Kayla says not to give up just because kids (or adults for that matter) don't find love at first taste. In the beginning, you might just get them to touch the food with their tongue, and then gradually work up to eating it over a period of time.

That's one thing I love about my job--always learning!

--Judith Allee

Parent Support Coordinator