"You only see the outside of me": Dwight Core, Jr

The link is to an article in our local paper, discussing the placement of a home-video about Dwight in the Library of Congress. A fitting tribute, I must say. There is a video link in the article.

Watch it, but have tissues ready.

No amount of preaching is needed as commentary on this video; it speaks quite plainly for itself. But the mom in me felt stabbed to the heart to hear Dwight's father's voice "explain" that Dwight was "severely retarded".

There are 30 years separating Dwight and Emily, and for all the problems I have encountered with misunderstanding schools and health-care professionals, no one has ever used the term "severely retarded" to me. And yet, when I look at Dwight I see Emily. When I see Dwight playing in his backyard, I know (it's so obvious, to eyes that can see) that Dwight was never "severely retarded" and the only difference between Dwight and Emily was thirty years of elapsing time.

May the next thirty years bring as much change in expectations.

mary

Ban the "R Word"--please call her Emily

I try not to jump on bandwagons too quickly, now that I am a little older and potentially wiser. However, I've decided that the time has come to stop being entirely nice about this subject.

Stop using the word "retard" as an insult. Just...stop.

If you are reading this blog because you are a friend or family member, then you know Emily. Every time someone perpetuates the use of the word "retard" as an insult, it implies Emily. It means "Emily". "Don't be such a retard" means "Don't be Emily". "That was so retarded" means "That was so Emily".

Is that how you want people to think about Emily? As a stereotype, and a bad one at that?

If nigger is the wrong thing to call a member of a specific group of human beings, then retard is just as wrong a thing.

So JUST STOP.

If you are interested in a little reminder, there are mugs, magnets, stickers and cards here. Maybe if you drink your coffee out of a mug with Emily's face on it each day, you'll learn to stop saying the R word.

It's time.

And I'm not the only one who thinks so; this current attempt to help people understand how much damage that one word can do is being fueled by the movie "Tropic Thunder". See, for instance, this page from Special Olympics Kansas.

And I'll tell you what: When Emily goes to school tomorrow to start her senior year in high school, if there is ONE T-shirt with the slogan "full retard mode" on it or if she overhears ONE student using that term, this mom will be filing a harrassment suit against my city public school system.

People: Wake up! The word "retard" used in this manner is "hate speech". I'm sick of it. I don't think we should take it anymore. And the indecency is only heightened by the fact that the word impacts those least able to speak for themselves.

So I will speak for all the Emilys out there:

STOP USING THE R-WORD.

mary ("Emily's mom")

Starting Over: Re-thinking Mote Guardians

I'm going to be re-launching this blog. I'd like to concentrate on the concept that we are all guardians of one another and go from that personal conviction.

Watch this space.

mary

News Release: It's not the uninsured and the undocumented crowding our ERs

Surprise, surprise! What we thought we knew about ER overuse is not correct, according to a newly released study by the Center for Studying Health System Change:

Hospital Emergency Department Use Varies Greatly Across the United States

Contrary to Conventional Wisdom, Communities with More Uninsured, Hispanic or Immigrant Residents Generally Have Lower Levels of Emergency Department Use

Press Release
July 18, 2006

FURTHER INFORMATION, CONTACT: Alwyn Cassil (202) 264-3484 or acassil@hschange.org

WASHINGTON, DC—Contrary to popular belief, communities with high levels of uninsured, Hispanic or immigrant residents generally have much lower rates of per person hospital emergency department (ED) use than other communities, according to a study by the Center for Studying Health System Change (HSC) published today as a Web Exclusive in the journal Health Affairs....

...Despite common perceptions that high rates of uninsured and immigrant residents contribute to higher ED use, communities with the highest levels of ED use generally did not have the highest numbers of uninsured, low-income, racial/ethnic minorities or immigrant residents....

...while a rapid influx of immigrants may contribute to ED crowding in some individual hospitals—particularly along the U.S.-Mexico border—immigration is not a major contributing factor to ED crowding nationally, even in many communities that have a large population of Hispanic immigrants.

"Hispanic immigrants—a high proportion of whom are uninsured—are not heavy users of EDs compared to other individuals, including whites with private insurance," Cunningham said. "And their numbers are still too small in the vast majority of communities nationwide to have a major impact on the health care system in those communities."

For example, noncitizens in 2003 on average had about 17 fewer ED visits per 100 people than citizens, while uninsured people had 16 fewer visits on average than Medicaid patients, about 20 fewer visits than Medicare beneficiaries and roughly the same rates as privately insured people....

Read the full news release at the web site linked above.

I always suspected it wasn't as simple as everyone made it seem to be. Things generally are more complex than they appear to be on the surface; a good reminder about knee-jerk reactions to perceived problems, probably.

:-)

mary

Change of Shift is up at Emergiblog

The hardest-working nurse of the blogosphere has started a blog carnival starring nurses: "a nursing homage, if you will, to the great tradition of Grand Rounds. An amazing array of wonderful stories from nurses, patients and doctors are here for your perusal this week."

Check it out at Emerigiblog!

mary

Definitions vs. Understanding

The major problem with designing a label for a category of human being is the subsequent feeling that the ability to label a concept means we understand the concept. The other major problem is that labeling people by categories implies both inclusion and exclusion and thus limits (by the very act of labeling) recognition of complexity. Labels simplify, and in doing so, eliminate complexity and cause us to concentrate on similarity rather than difference.

If you are a health professional, look around you today when you get to work. Think of the professionals around you as a group, and you will notice that you are surrounded by a group of human beings that, for the most part, are above average in intellectual capacity and performance. They are, for the most part, college graduates with a certain kind of intelligence that includes the ability to absorb and retain large amounts of knowledge about the human body and psyche. You are recognizing something about a self-selected group of people and we are going to label these individuals "mildly to moderately gifted".

Which is true. As a group and as individuals, that label defines something about the intelligence and ability of that cohort.

But the truth of the label doesn't cause us to understand that cohort, either as a group (an entity) or as individuals within the group. We know next to nothing about individual abilities within the group. We can't account for one person's ability to play the violin and another's ability to finish advanced Sudoku puzzles faster than anyone else; nor for this surgeon's specific ability to understand spatial relationships and that therapist's specific ability to understand body language. We can only say that within the range of "mild to moderate giftedness" there are individual strengths and weaknesses.

Further, if you look closely at that group we have now labeled, you will see many more differences. We won't all look alike, for one thing. We are different ages, races, sexes, and body shapes. We come from different ethnic and religious backgrounds. We have different sexual orientations. We are single and married, parents or non-parents, children of living parents or orphans. We like different books, we attend different churches, and we speak different first languages. We are as diverse as we are similar.

This concept doesn't seem difficult to understand, because we are living inside that group. We know it, we experience it daily, and we have self-reference. We understand that a label of "giftedness" implies only one thing, really, about the group we exist within.

Yet this seems a difficult concept to get across when discussing the label "mental retardation". We look around a selected group of people with functioning at the level that would allow us (using our professionals guidelines) to label them as "mild to moderately mentally retarded" and inevitably we focus on similarity.

But in reality, the individuals in THAT group are no more alike than the individuals in OUR group. That is misunderstanding.

That is the danger of labels.

If you want to begin to understand the individuality of each human with whom you have contact, begin to look around at the groups you find yourself in. Practice focusing on similarity and then difference. This is the first step to recognizing within yourself how the labels you put on people limit understanding of them as human individuals.

mary

17th Annual Kids Count Report Released 6-27-2006

Since 1990, the Annie E. Casey Foundation has been releasing a yearly, state-by-state, statistical comparison of leading child health indicators, focusing on areas of vulnerability such as poverty, low birth weight, and teenage pregnancy. The report can be read in its entirety at the web site linked in the title.

The ten indicators studied are:

• Percent low-birthweight babies
• Infant mortality rate
• Child death rate
• Teen death rate
• Teen birth rate
• Percent of teens who are high-school dropouts
• Percent of teens not attending school and not working
• Percent of children living in families where no parent has full-time, year-round employment
• Percent of children in poverty
• Percent of children in single-parent families

According to the summary released with the report:

...the overriding picture that these 10 indicators present is one of little change since 2000....At the national level, only 4 of the 10 indicators of child well-being showed that conditions improved since 2000, while child well-being worsened on 3 indicators, and conditions were unchanged on 3 indicators. It should be noted, however, that many of these changes were very small and may be nothing more than random fluctuations.

Naturally, the portrait of child well-being varies among states, and state-level measures often mask important differences within a state. Of the 50 states, only 15 states improved on more than 5 of the 10 measures used here.

The portrait of change in child well-being since 2000 stands in stark contrast to the period just prior to 2000. Between 1996 and 2000, 8 of the 10 key indicators used in KIDS COUNT improved, and several improved dramatically. The improvement was experienced by every major racial group and in nearly all of the states.

Pre- and post-2000 trends are clearly illustrated by changes in the rate of child poverty since the mid-1990s. Between 1994 and 2000, the child poverty rate fell by 30 percent. This was the largest decrease in child poverty since the 1960s. Since 2000, however, the child poverty rate has inched up a percentage point.

Percentages vary quite widely from state to state:

...a summary of results from this year’s KIDS COUNT Data Book and highlights the enormous variation among the states. The rates of the worst states are nearly two to three times those of the best states on every indicator.

The importance of reporting state-level data is underscored by the fact that most measures in most states are statistically significantly different from the national value for each measure. In other words, the national value for a measure does not tell you much about most states.

There are wide and persistent disparities in ethnic groups:

The size of the gap between black and non-Hispanic white children varies by indicator, but the outcomes for black children are worse on every one of the 10 indicators. The same is true for American Indian and Alaskan Native children when compared to non-Hispanic white children.

An interesting look at the health of the next generation of Americans. Anyone interested in trends and the relationship between societal risk factors and poor child health should pay attention.

mary

Is saying it's hard the same as excusing murder?

Another day, another story about a parent trying to murder her child and blaming the disability:

Kellie A. Waremburg, 32, of Pekin was charged Thursday for trying to kill her 4-year-old daughter, who has cerebral palsy, with a potentially lethal cocktail of medication. Waremburg told police she decided to give the mixture to her daughter to get her "to go to sleep and not wake up."

The child, Lexus Fuller, also has to be fed through a feeding tube, is physically handicapped and uses a wheelchair, has blindness and mental retardation, all of which can be related to cerebral palsy.

Although Waremburg's individual struggles with raising Lexus were not known Thursday or what was the exact reason behind the alleged attempt to kill the girl, her case is similar to that of Karen McCarron, the Morton woman who allegedly suffocated her 3-year-old autistic daughter, Katherine, and told police she "wanted to end her pain and Katie's pain."

There's lots of talk in the disability community about these recent murders (and attempted murders). And it's not just the murders themselves, but the fact that advocacy groups are using these murders as a way to talk about how difficult it can be to raise children with significant disabilities in modern societies that offer little in the way of actual family support.

Now first of all, there isn't any excuse to murder your child.

But I don't think this is really what the groups who are speaking up are trying to say. I think they are just responding to questions along the line of: "Excuse me, Mr. Advocacy Organization Representative: is it REALLY that difficult to raise a kid with autism? With cerebral palsy? With whatever condition includes severe or profound cognitive impairment, Etc?" To which Mr. Representative responds, "Yes. Yes, it is difficult".

And then the reporter---and the rest of the non-disabled world---automatically responds, "Well, see? I don't blame the parent. They were really pushed to it".

No, they weren't. I've been a parent of such a child, and known and worked with other parents of kids with profoundly complex and difficult disabilities, for 16 years. I don't know anyone who has killed her kid.

And although the large majority are having rather ordinary lives, I've known some in deep despair. And still, they don't murder their children.

But how are parents of children with complex and challenging disorders supposed to reveal the truth of their lives, the difficulties that are real and challenging, without causing reporters (and society at large) to jump to the conclusion that murder is understandable?

I ask you.

And once the community in which these murders occurs is made known of the despair of some parents, what responsibility does it bear to try to assist?

Because if it's just about shocking front-page stories, if it's just evoking a "tsk-tsk" response from the community, and particularly if the mothers and fathers who kill get off easily on the basis of "sufficient suffering and punishment"...well, I fear for some other fragile children. I really do.

mary