HAPPY FATHER’S DAY

I was lucky to have the father I had. I don’t recall him ever giving me advice on any subject other than fishing (and Lord knows, he knew his stuff about that). But the life lessons I learned from him just by observing how he lived his life (especially how he acted toward other people) were priceless.

Those lessons from my father certainly have helped me to be a better father. The best lesson on fatherhood I got from him was to let my children show me how to be their servant. I’m not talking about being a slave, kowtowing to their every whim. I’m talking about being a servant in the best sense of the word: placing the needs of the children before my own.

I’ve met a lot of dads of special-needs kids over the last few years. Some simply don’t want to deal with the fact that raising their children isn’t easy. Others welcome their children’s disabilities, but primarily because it’s a way for them to be the center of attention themselves by shouting to the world that they are superdads. Those two types are the men who would be less-than-ideal as fathers regardless of their kids’ challenges.

On the other hand, I’ve met a lot of fathers who understand that fatherhood requires sacrifice ⎯ of time, of money, and of ego.

Although the challenges are different with every individual child, good fathering (and mothering) is always a function of sacrifice. Happy Father’s Day to all the servant dads out there.

PEOPLE OF ACTION AND HOPE

Another Autism One Conference has come and gone. A-1 has become the best of the autism conferences. It covers the biomedical side of things in an inclusive and comprehensive manner, but it also includes so much more to connect attendees to the often-scary world of autism, from political and legal issues to educational strategies. Just as importantly ⎯ maybe more importantly ⎯ the people who come from around the country, and beyond our borders, meet and learn the most important lesson of all. We are not alone.

This year, I volunteered and made fewer of the sessions than I did in the past. (I was under orders to attend the talk my lovely-and-talented wife, Sym Rankin, gave with the also-talented Sonya Hintz, giving advice on getting mainstream physicians to look past the autism and understand the underlying physical problems. They did a great job.) Instead, I filled most of my time manning the registration/information desk, and just talking to people.

I did make a couple of sessions that helped to place a context on where we are in this troubling time. One was Friday evening’s talk by Mark Blaxill, entitled, “Intellectual and Moral Failures in Autism Science.” It was thoughtful, provocative, and perhaps a little controversial. The basic theme was that the autism epidemic demands moral action, and we simply aren’t getting it from the intellectual elite. Rather than open their eyes, most people in the sciences are content to let the elite do their thinking for them; they are caught up in “expert worship.” (As we saw in recent examples of the worst in mainstream “journalism,” the elite have a willing partner in the media: see here and here).

Mr. Blaxill drew parallels ⎯ and he was very careful to note that parallelism is not the equivalent of proportionality, so this is not meant to be an invidious comparison ⎯ between the silence of the “good Germans” in Nazi-controlled Germany and that of scientists who might suspect there is a truth beyond what they are told to believe. There is a moral requirement to bear witness that is simply not being fulfilled, and we all need to hold the world of science accountable.

Mark Blaxill was also part of the other session I want to mention. He, Kim Stagliano, and Dan Olmsted were part of a panel discussion ostensibly about Age of Autism, which has become the daily news organ of record for some if us. And while they did discuss the history and mission of AoA, they decided to focus on the single most important story they have covered (see here and the links therein). To do that, they turned the program over to three members of the Somali community (two from the community in Minnesota, which has been deeply affected by autism, and one from Toronto). They spoke of the incredible outbreak of ASD within their ethnic group, a people that had no need for the word “autism” in their language until they came to America. What they experienced here told them that the regression of their children into ASD was a result of vaccinations being forced upon them with little explanation and no real justification.

At first, I shared the Somalis’ anger. I felt a twinge of shame that my country, with its tradition of doing right by those who seek its shelter, could first force these newest Americans into a vaccination program that triggered a disease they had no prior knowledge of, and then the same country ignored their plight. But their story did not end with anger. They took action. They organized and found ways to get people to listen to them. And they have hope.

Action and hope: that pretty much sums up my 2009 Autism One experience. I was expecting to see a smaller-than-average turnout, considering the economy and the media attacks on our opinions. I was surprised to see that attendance was actually quite heavy. Many old friends were unable to make it, but there were lots of new friends to be made. And they weren’t shy about asking the veterans for help. I referred several people to the TACA moms, who took a lot of time to give fantastic advice (you ladies are the absolute best, and a special shout-out to Linda and Christina).

The newbies there helped to energize me for the continuing fight. They are already taking action to help their children. And they are filled with hope, something I share with them.

Action is required, and the hope is real.

IT'S THAT TIME OF YEAR

I'm looking forward to seeing a lot of friends, both old ones and new ones, at Autism One. If you spot me, make sure to say "Hi."

WHY DO WE STILL SEE THIS

Most of us are tired of the whole concept of "autism awareness." Shouldn't the world be aware enough already? But every now and then I see something that tells me the job is not done yet.

There was apparently a recent letter to The Arizona Republic, in which some cranky individual decried the fact that disruptive children are seen in public. In response, Mr. David Cuddeby wrote the following response (go here to see the original post and comments):

The behavior of some children in the store where letter writer Cherie Anderson works describes the way my 3-year-old grandson occasionally acts ("Stores no place for unruly children," Letters, Friday). I guess we could get him a little T-shirt that says, "This is how autism looks."

Perhaps we will take her advice and just leave him at home. As she points out, it is our problem, not hers.

The sarcasm in Mr. Cuddeby's last sentence was lost on the folks around there. Here's one of the comments left at the on-line posting of the letter:

Mr. Cuddeby, you're quite correct in you last statement in your letter; it IS your problem, not anyone else's.

Is your child better served, during those periods of time his behavior becomes uncontrollable, in a public place, where he can - and does - become an object of ridicule by others unaware of his health condition or with his other parent, at home, in an environment he knows to be safe for him?

I want to be clear - I am not saying you should lock your child away at home. I'm suggesting that you, as a responsible parent, need to determine what lengths outside activity has a beneficial effect on your autistic child, and have an option available for those periods of time you child enters one of his autistic fugue states.

Actually, that was one of the nicer comments. Here's one that seem to lay the real feelings of some folks in Arizona on the line:

Okay, let's give a little of this unruly behavior to autistic children who represent 1 out of 150 kids. Now please explain away the other 149 brats screaming at the top of their lungs. God, we have become such wimps and seek to victimize every thing we do. Nipple sucking liberals always have a "reason" for why criminals committ [sic] crimes and how it;s [sic] not their fault and why kids act like brats. Sad.

The general tone of the more civilized comments was that parents of autistic children should not subject their kids to more than they can handle. Loosely translated, that means, "please don't bring your children anywhere where we might be reminded that this autism thing exists."

So despite our desire to move on, we still need autism awareness. We need for the world to be aware that this is not just our problem; it is everyone's. If we don't get help in determining cause and treatments, and if we don't get help in caring for our kids now, then the rest of society will become all-too-aware after we're gone that they have a problem.

Go here to read Mr. Cuddeby's letter and all the comments. Feel free to add to the comments yourselves. Spread a little awareness.

POSTSCRIPT: I went back and did a little editing on this post, realizing that was being a little too broad in my condemnation of folks in Arizona. There's too many good people there, and what we see in these comments may better be characterized as merely being an open and obvious example of attitudes we encounter too often everywhere.

HAPPY MOTHER’S DAY

The Autism File, in both its print and on-line incarnations, has paid tribute to autism mothers everywhere. It’s oh-so-timely, and oh-so-deserved.

I am in constant awe of the mothers of special needs kids that I have met over the last several years. They are relentless. They spend endless hours searching for answers, and wind up becoming the real experts. I’ve seen some of them, with little or no formal medical training, not only become conversant in technical jargon, but they have learned the fine points of clinical application.

Special needs mothers do whatever it takes to stand up for their kids. They educate themselves on their children’s rights, and they become tireless advocates.

I have the privilege of sharing my life with such a woman. There is not a day that passes without my looking at her and marveling that God could create such a person.

It’s not entirely inaccurate to say that what motivates special-needs mothers is the same thing that motivates any mother: an endless supply of unconditional love for their children. That’s the saintly quality of motherhood. What sets apart “special needs” mothers is the opportunity to show an extra measure of maternal devotion on a daily basis.

With that in mind, I’d like to re-post a portion of something I first wrote at the end of October, 2005. I posted it for All Saints Day of that year [the complete post is here], because I wanted to explain to the world why it was that I claimed sainthood for my own mother.

Betty Bursley was born to an old New England family, a direct descendant of Mayflower pilgrims. Her father was a landscape architect for the United States Park Service, and she grew up primarily in Cleveland and Richmond. Education was valued in the family, and my mother earned a degree in biology from Randolph-Macon Woman’s College. During World War II, she met and married a handsome lieutenant in the Army Corps of Engineers, Hugh F. Rankin. After the war, Dad went back to school, and wound up becoming a professional historian. Throughout graduate school and beyond, my mother worked (mostly clerical jobs), helped entertain Dad’s professional colleagues, served as Dad’s typist and most-trusted editor, and raised three sons. She was not only our mother, but was also the best teacher any of us ever had. There was little about the world around us that my mother could not explain and help us understand.

Eventually, the family came to New Orleans, where Dad joined the faculty at Tulane University. Faculty pay in the fifties being what it was, my mother needed a job, and she became the secretary for the newly formed Jazz Archive (now called the William Ransom Hogan Archive of New Orleans Jazz) at Tulane’s Howard Tilton Memorial Library. She took notes at jazz funerals and second-line parades, assisted the curators in conducting oral histories, and helped organized a priceless collection of recordings, sheet music, photographs, and memorabilia. She developed a passion for the music and a genuine love for the musicians. Despite no academic background in musicology, Mom eventually became an associate curator of the Archive.

After retiring from the Archive, my mother (by that time known as “Big Mama,” a nickname she acquired partly because Dad had been dubbed “Big Daddy” by his graduate students) took on several volunteer positions with various groups. In the early eighties, she heard about a fledgling community radio station, WWOZ, which needed volunteers. For the uninitiated, WWOZ plays a wide variety of genres, but specializes in the musical forms that help to define South Louisiana. My mother started out typing letters and stuffing envelopes, but somebody soon realized the resource they had, and she was thrown in front of a microphone. For the next several years, Big Mama hosted what became known as the “Moldy Fig Jam,” a popular 90-minute program of Traditional Jazz and Ragtime on Saturday mornings. Mom took enormous pleasure in sharing her love of New Orleans music, and included far more background on the musicians than could be found anywhere else on the radio dial. After decades of being known as Hugh Rankin’s wife, she was now an internationally known personality (WWOZ’s web feed has made it a world-wide favorite).

Of course, the fact that she was a nice person who had a knack for teaching others what she knew did not qualify her for sainthood. The remarkable thing about Big Mama was the nature of the lessons she taught. And the best way to explain that is to write about her parting lesson.

During a heart operation in the eighties, Big Mama received some tainted blood, and contracted Hepatitis C. It went undetected for years, until she eventually started having active liver disease. My mother expressed no bitterness, and she blamed nobody. She faced this problem as she faced everything in life, good or bad: with equal parts optimism and acceptance.

In late 1997, Big Mama’s liver began to fail altogether, and she spent the next few months alternating between improving and falling into hepatic comas. Whether she was conscious or comatose, my brothers and I, and often our wives, were at the hospital a lot: reading to her, helping to feed her, or just spending time. She had a spell in the middle when she was alert, happy, and as full of life as anyone could hope to be. We talked for hours about lots of things: philosophy, religion (Mom was a lifelong Presbyterian; I am an Episcopalian), music, politics, and whatever happened to be going on in the world. It was important small talk, because no matter what plans we made, the unspoken reality was that she probably wasn’t going to be coming home.

Sure enough, Big Mama fell into another hepatic coma, from which she clearly wasn’t going to come out. A few days before she died, I got out the Bible from which we read during her last alert interval. Struggling to figure out what to read to her, I went to the assigned readings of the day listed in the Episcopal Book of Common Prayer I had left in her room. One of the readings was the familiar exhortation by St. Paul in his first letter to the Corinthians:

If I speak in the tongues of mortals and of angels, but do not have love, I am a noisy gong or a clanging cymbal. And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have faith, so as to remove mountains, but do not have love, I am nothing. If I give away all my possessions, and if I hand over my body so that I may boast, but do not have love, I gain nothing.
Love is patient; love is kind; love is not envious or boastful or arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice in wrongdoing, but rejoices in the truth. It bears all things, believes all things, hopes all things, endures all things.

There could be no more fitting passage to describe my mother’s relationship with her family, her friends, and the world around her. I looked up and saw my mother sitting upright in bed nodding her head. Her meaning was clear: “That’s it; that’s all you need to know.” She put her head back onto her pillow, still beaming a beatific smile. That was the first time in almost a week that her head had been off of the pillow or that any expression could be discerned on her face. It was the last time she communicated in any way.

My mother passed away on February 24, 1998, as I held her hand and my wife, Sym, stroked her hair. (In a last act of kindness, Big Mama held on until Sym could get there so I wouldn’t be alone.) Of all days, it was Mardi Gras morning. We were at Touro Infirmary, a hospital just a block off of St. Charles Avenue in New Orleans. Along the Avenue, families were gathered to celebrate life as it can only be celebrated in New Orleans. I like to think Big Mama, hoping to second line one last time, wandered around until she found the Irish Channel Corner Club making their annual “march” downtown to the beat of the Paulin Brothers Band. I can only hope the band was playing “When the Saints Go Marching In.”

It doesn’t matter whether there is a label; every child is a “special needs” child. Each is unique. Each is deserving of the saintly love of a great mother.

Happy Mother’s Day to all the wonderful women who give that kind of love.

ADDENDUM: For more on the saintly quality of motherhood, go here to Ginger's blog.

FOLLOWING THE MONEY

I’m really not blindly anti-vaccine, but there can be too much of a good thing. Over the last couple of decades, as we’ve seen the vaccine schedule expanded to include more and more shots ⎯ and earlier and earlier sat that ⎯ we’ve seen a steady decline in overall health. (Okay, I don’t really have any stats to back that up; I’m relying mostly on the observations of heath-care professionals I know who tell me they are seeing more and more autoimmune problems in younger and younger people.) Isn’t that the opposite of what we should be seeing?

The amazing expansion of the vaccine schedule runs counter to the constant pronouncements from the defenders of the vaccine program (who have become known as “the Offiteers”) that pharmaceutical companies really don’t make much in the way of profits from vaccines. Why would the companies go to great lengths to develop new vaccines and get formal approval for them? How can they afford to pay such tremendous royalties to patent holders if they aren’t making money.

Barbara Loe Fisher (founder of the National Vaccine Information Center) addressed those questions in a recent post on her blog. The post, “Politics, Profits & Pandemic Fear Mongering,” could not be more timely. With everyone going into panic mode over the outbreak of swine flu, thee is a legitimate fear that our government might repeat the mistakes of the last swine flu panic back in the seventies. The feared pandemic never appeared, and the emergency vaccination program was nothing short of disastrous in terms of the number of deaths and diagnosed cases of Guillen-Barre.

Who’s in charge of our public health policy? Who influences how that policy is depicted in the mainstream media? All one has to do is follow the money.

TALKIN’ SENSE IN NEW BRUNSWICK

When I first saw that Alison Singer, Karen London and Paul Offit had joined forces to found the inaptly named Autism Science Foundation, my first thought was “birds of a feather flock together.”

The reaction of Canadian blogger, Harold Doherty, had a somewhat less juvenile take on it. He posted his thoughts on the obvious truth that there is more politics than science behind this new organization. (Read it here.)

What is most striking about ASF is that its statement that vaccines are not involved in autism takes up m ore space in its stated goals than stating just what it is they do intend to research. At a time when more and more voices in medicine and science are agreeing that the vaccine-autism issue is not dead, ASF is insisting that there is no issue. As Harold writes:

Given the existence of legitimate questions concerning possible vaccine autism questions it seems odd for an organization founded to provide quality scientific research to make such a dogmatic statement conclusively ruling out those very questions. It also seems odd that the founders of this organization believe that public confidence in the vaccine program will be maintained by shutting the door on areas of research in which substantial numbers of the population believe are legitimate areas of inquiry - including members of the public like Dr. Bernadine Healy, Dr. Julie Gerberding, Dr. Duane Alexander and Dr. Jon Poling.

If the issue were as dead as the folks at ASF want us to believe, there would be no need for them to talk about how they’re not going to study it; they’d tell us what it is they plan to delve into. Ms. Singer and Dr. Offit are telling us to pay no attention to that man behind the curtain. But if we take a peek, we’ll see what it is that makes all the smoke and noise.

Go here to read Harold’s post.

MR. PRESIDENT, DON’T MAKE ME REGRET MY VOTE

Imagine, if you will, that we’re back in the sixties. Imagine that President Lyndon Johnson wants to appoint a national coordinator to oversee all of the civil rights programs that are being enacted. Now, imagine that LBJ appoints Lester Maddox to the post.

Sounds ridiculous, doesn’t it? Yet, there’s something in the air that could prove to be every bit as ridiculous.

Over at Adventures in Autism, Ginger is reporting the rumor that Alison Singer is lobbying to get appointed to the position of Federal ASD Coordinator, which is being created under the new administration. I’m not usually ne to report rumors, but then neither is Ginger. If she’s blogging it, I can only assume that there must be some substance there.

Alison Singer assuming that kind of leadership role would be so wrong in so many ways. Please go here to Ginger’s blog, and read her post. Then leave your comments there.

THE DEBATE ON LARRY KING LIVE

Below is an edited version of the recent Larry King Live, addressing the open question of the role of the absurdly expanded vaccination schedule and the autism epidemic. Although Jenny McCarthy and Jim Carrey were the main attractions, the real stars of the evening were Dr. Bernadine Healy and J.B. Handley.

The video includes a remarkable display of intellectual integrity from Dr. Healey, the former Director of the NIH. Unfortunately, this edited version does not include any of Mr. Handley’s remarks.

I have always been thankful for Mr. Handley’s contributions to keeping this debate in the forefront. I must admit that there are times when his past demeanor may have elicited a slight wince and the occasional chuckle. On this night, however, he displayed the complete package as a spokesman. He was in control of the facts to a far greater extent than the medical “experts” on the other side, and his manner was a fine balance of rationality and emotion. Very nice job, indeed, JB.

Those who saw the show were introduced to a young girl, with what appears to be relatively profound autism. As every parent of an autistic child knows, however, ASD does not indicate a lack of intelligence or a lack of desire to communicate. Carly Fleischmann has started her own blog to express her thoughts. She was in communication with the show, and some of her comments were posted to the Larry King Live blog. One of those comments was: “I don’t think we can cure autism but I wish we could. The goal should be to get are inner selves out.” I hope that young Ms. Fleischmann elaborates on that thought in her blog in the days to come.

AUTISM YESTERDAY

Each family on the journey of recovery has its own individual story. We all have our own ideas as to how we got here. We all have different approaches to the process of cure, arrived at in consultation with professionals and by considering the specific underlying problems our kids have. The one thing we all share is hope.

Here’s a new film from Generation Rescue, in which five families share their stories.


"AUTISM YESTERDAY" Autism is Reversible from JB Handley on Vimeo.

WORLD AUTISM AWARENESS DAY

It’s World Autism Awareness Day, as declared by the United Nations General Assembly. How nice.

And of course, this WAAD is simply a lead-in to “Autism Awareness Month.” Over at Age of Autism, Kim Stagliano has suggested renaming it “Autism Epidemic Action Month,” because:

We’re doers ⎯ not do-gooders. There’s a difference. Awareness is no longer enough. It never was.

That’s a fine suggestion, but for now we’re stuck with the observances recognized by mass media.

It all begs the question; why do we need to be more aware? Is there really anyone out there that doesn’t understand there’s a lot of autism out there these days?

But I suppose there is a need for awareness. The world needs to be aware that we are seeing a real epidemic, that it’s not just a matter of better diagnosis. The world needs to be aware that the question of “why” has not been answered, and that we need to get to the truth, or things are going to get worse. The world needs to be aware that the so-called mountain of evidence supposedly leading away from particular causes has disproved nothing.

The world needs to be aware that we take very seriously our responsibilities as parents. Harold L. Doherty, at Facing Autism in New Brunswick addressed that the other day. He confronted those who attack parents for daring to suggest that there may be non-genetic components in causation, and there may be a hope for a better life through the process of cure. In his well-written post, Harold states:

It is parents who represent our children, protect them and advocate for their best interests. We are not advocating for an abstraction, we are not advocating on behalf of “autistics”, whatever is meant by that expression when used by people who claim to be autistic but claim that autistic disorder is not really a medical disorder. Attacks on parents advocating for their children with autism disorders are attacks on autistic children by attacking those who protect and advance their children's interests.

Reading that reminded me of something my friend, Ginger, wrote a few years ago, in response to a comment questioning who we are to undertake the “drastic” step of attempting to cure our children of autism:

Who are we? We are their parents. 



Making choices that will impact who our children will become is the blessing and burden of parenthood. We have to make HUGE choices for our children and we don’t get to find out the final impact and totality of those choices until their lives and personalities completely unfold. 



We are flying with blinders on, with the only view in the rear view mirror and out the side windows, and we can only make the best choices we can make with that information. Every time we make a choice for our children, we unchoose every other possibility for them.

Indeed. Our everyday reality is to constantly weigh potential benefits against known risks, and to inform all of our decisions with love.

On this World Autism Awareness Day, I’m aware that the life of my family has been made infinitely more difficult because of ASD. I’m also aware, however, that ASD has provided the opportunity to be inspired in my life. I am inspired by people like Ginger and Harold, and all of the others I would never have met but for the common struggle. I am inspired by my older children who constantly demonstrate unconditional love and patience for their younger sibling. I am inspired by my wife, who works with a small team of amazing professionals to make my son’s life better. And most of all, I am inspired by the Little Rankster. He isn’t ready to give up; why should I be discouraged.

Be aware. Be very, very aware. Be aware that we are here for our children.

BACK TO THE SOMALI MATTER

A few months back, we were talking about the perceived rise in diagnosed ASD among the families of Somali immigrants living in the Minneapolis area (see here, here, and here). Well, it seems those parents just might not be crazy after all. Of course, the powers that be are not yet willing to acknowledge that point.

As the Associated Press reported:

The Health Department studied Minneapolis public school autism programs for the three years starting with the 2005 school year. Researchers found the percentage of Somali children in the programs was two to seven times higher than non-Somali children.

“What that doesn't prove is that more Somali children have autism,” Health Commissioner Sanne Magnan said Tuesday. “That is the question that is still on the table.”
. . .
. . . the report said that one of the big questions is whether children might be misclassified when evaluators aren’t familiar with the child’s language, culture and behaviors that might be routine among some racial or ethnic groups.
Here’s a little clue for the Minnesota Health Department. If the parents have been confronted with something they never (or at least rarely) saw in children in their native land, and it’s now occurring at an alarming rate after they moved here, something is going on.

The New York Times quoted a CDC official, who seems to indicate that the agency is willing to take its usual head-in-the-sand approach:

The study was done in consultation with the federal Centers for Disease Control and Prevention. Coleen Boyle, director of the agency’s division of birth defects and developmental disabilities, called the study well done but preliminary, adding, “It highlights the importance of ongoing monitoring.”

There are no plans yet to study autism in Somalis elsewhere or to do genetic studies, Dr. Boyle said.

Why is no thought given to a study that might actually tell us something: an examination about what might be different between these families’ lives in Somalia and their lives here in the US. Is it because such a study might actually tell us something?

JOHN HOPE FRANKLIN

This past November 4th, I sat in my living room and watched an incredible moment unfold on television. The first African American to be elected President was giving an electrifying speech from Chicago’s Grant Park. I thought of just how far our nation had come in my lifetime. And I thought of John Hope Franklin.

I was raised as a white boy in the Deep South, but my parents did their best to keep me from growing up with the prejudices that had infected that part of the country ⎯ and the rest of the country as well ⎯ for too long. It was through my parents that I met John Hope Franklin.

Dr. Franklin, grew up in Oklahoma, and was raised to overcome the prejudices that would otherwise stand in the way of success. He attended Fisk University and Harvard, earning his Ph.D. in history in 1941. He went on become one of the eminent historians of his time, and even served as a consultant to the legal team arguing for the plaintiffs in the landmark desegregation case, Brown vs. Board of Education. He strove to tell the complete story of America, especially the lasting legacy from the early nation’s reliance on slavery. For his efforts, he was awarded a richly deserved Presidential Medal of Freedom in 1995.

I didn’t really know that man: the famous John Hope Franklin. The John Hope Franklin I knew was a warm and courteous man who was devoted to three things: his family, educating, and growing beautiful orchids. He and my father, himself an eminent historian, may not have been necessarily close, but they shard a friendship having its roots in a deep mutual respect for each other as historians and writers. In the few times I got to speak to Dr. Franklin, I came to share my father’s respect for a remarkable man.

One experience with John Hope Franklin stands out particularly in my memory. Dr. Franklin and his wife, Aurelia, came to New Orleans for a professional meeting. My mother offered to show them some of the sites, and she mentioned that she often took out-of-towners to see some of the nearby plantations. Mom immediately winced, realizing she had just volunteered to take the nation’s preeminent authority on the evils of slavery to a sugar-coated version of the scene of the crime. Dr. Franklin graciously declared that he would find such a trip to be interesting. I’m not sure if my mother thought including her youngest son, then in high school, would offer some level of emotional support for her, or if she merely thought I would get a little enlightenment courtesy of John Hope Franklin. In either event, I went along.

I don’t recall which plantation we were at, or exactly what was being said. I do recall that the tour guide was well into the Gone With the Wind version of history when I saw a slight smile come to Dr. Franklin’s face. He raised his hand, and proceeded to deliver a five-minute lecture that destroyed all of the myths that had just been thrown at us. Although it was indeed a lecture, it was delivered without a trace of anger, bitterness, condescension, or accusation. This was simply another opportunity for John Hope Franklin to do what he loved best: educating. He did it with a soft voice that demanded attention.

I looked at the others in the room. The tour guide looked impatient and upset that someone had gotten her off of her script. The other people taking the tour, however, looked thoughtful. None of them knew just who this gentleman was, who looked distinguished even in walking shorts and a sport shirt. It was clear, though, that he was someone who merited attention.

That was the key to John Hope Franklin’s genius as an educator. He was able to reveal the truth about the most inhumane acts, while never denying the humanity of those who benefited from the evil institution. And that drove the point that much farther toward home.

Dr. Franklin has been quoted as saying, “My challenge was to weave into the fabric of American history enough of the presence of blacks so that the story of the United States could be told adequately and fairly.” For him, it was a simple matter of setting the record straight.

John Hope Franklin passed away last week the age of 94. I thank God he lived long enough to see the last election, an outward and visible sign of the progress he worked so hard for. I also thank God that I knew the man, even if it was only a slight acquaintance.

A SHARED TRAGEDY

To date, I haven’t written anything about the Sky Walker case. It’s been hard to know what to say; there are so many questions and so few answers. The whole situation is tragic on so many levels.

Now I feel a little guilty for not writing sooner about a mother and son who are both victims. (For a great explanation of what I mean, see this recent post by Kim Stagliano at HuffPo.) I don’t feel ashamed for ignoring the true tragedy, but I cannot deny not speaking out sooner, and that’s to my discredit.

Recently, Age of Autism posted the comments of Sondra Williams. For those unfamiliar with her, Ms. Williams is an adult on the autism spectrum. For far too long, however, she was diagnosed as being mentally ill, and was subjected to a torture of institutionalization and medication. She now takes to task ⎯ and properly so ⎯ all of us in the on-line autism community (whether we be in the cure or ND side of things) who simply didn’t want to face this situation squarely:

. . . So this story itself is of making me quite ill but what is of making me more ill is the way much on the various list turn their backs away from such stories, as if wishing it away but this could be of any of our sons, and how would we be to have felt if those in the autism community turned of their backs to our child in such cases and left of him vulnerable to the systems.

It sickens me to know of the heart of so many might have of compassion but not willing to discuss or be of proactive to this.

And Ms. Williams personal story carries a message for those who deny a connection between what happened and Sky’s condition: that is, to those who think all autism represents nothing more than a different point of view:

Autism is of so many things but often only to those who are of much higher functioning and or Asperger’s is it just a different frame of mind, but to me it has been of my hell much of life……the only things life powerfully teached me was the humans were to be avoided because they would cause of me great harm. My life grew up in mental wards designed for adults with mental illnesses and drug addictions and so it left me vulnerable to that situation and not appropriate for a child, Because of being of a female and also reacting to much abuse and neglect my presentation was of intermeshed and most were of not looking at autism in females so was of misdx much years much much year. And finally correctly dx with autism spectrum in 2001 and confirmed by 3 psychologist and 3 psychiatrist of autism. Not asperger’s type.

After the Katie McCarron murder, many in the cure community were rightly chastised for showing greater sympathy to Katie’s mother than to the victim. Some of the loudest of those accusers now seem to be oddly devoid of sympathy for anyone in the present tragedy. And that’s just wrong, as Ms. Williams points out:

Please do not let of them treat of him this way. Hims mother can in no way ever rest in a peaceful fashion as long as he is of not well. He is of being punished enough by removal of the home, not having hims main source of love and care being there for him, he has no awareness of where she is or why she is not coming and why he cant go home to the only place were all of hims life is. 
 


The sad is when one looks at the parents who murder their children of disabilities they are of often given less punishment towards them when they killed with intent and he not having the ability to be aware and did not do anything with intent is of punished by far more harshly.

Please read the complete post here. The tonight, say a prayer for both Gertrude Steuernagel and Sky Walker.