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