Saturday, March 23, 2013

An Honor

"A burden," Wisconsin state representative Dan LeMahieu (R-Cascade) called my daughter, speaking before a gathering of school board members and public school administrators in Madison last week.  "A burden on our schools."

OK, he wasn't singling out Joy as an individual.  He was talking about students with special needs in general, you understand.  But especially the more disabled ones, the more expensive ones. Speaking in Joy's own school district, about students with extra challenges... so yes, in a very real way, he did refer to my daughter as a burden.

Rep. LeMahieu probably didn't know it, but his choice of words has a long and dishonorable history when it come to people with developmental disabilities.  Consider the words of Samuel G. Howe, 165 years ago, speaking in 1848 before the Massachusetts legislature on the subject of people with developmental challenges (emphasis mine):
This class of person is always a burden upon the public.  Persons of this class are idle and often mischievous, and are dead weights upon the material prosperity of the state.  They are worse than useless.  Every such person is like a Upas tree, that poisons the whole moral atmosphere about him.
At least Mr. Howe was "only" arguing that people with developmental disabilities should be institutionalized apart from the rest of society, thus setting up over a hundred years of segregation and horrible conditions at immense taxpayer expense.  At least Howe was "only" recommending putting people away, not putting them to the unspeakable experiments and gas chambers of the concentration camps, where people with disabilities were tortured and slaughtered not a century later.

Speaking of poisoned moral atmosphere -- in the year of my own birth, 1968, some so-called thinkers were still stuck in the same atrocity-level patterns.  Here are the words of "ethicist" Joseph Fletcher writing in the Atlantic, arguing that putting to death was an acceptable choice for infants with Down syndrome: "True guilt only arises from an offense against a person, and a Downs is not a person."

Let that one sink in for a little bit...

Forty-some years later, my wonderful daughter is a welcomed and contributing member of her classroom community, together with her delightful and accomplished classmate who has Down syndrome, guaranteed by our country the right to a free and appropriate public education.

"A burden," Rep. LeMahieu called them last week, in the language of those who would have denied these girls their humanity not a generation ago.

Then an orator from the audience took the microphone, a school superintendent from Pulaski, Wisconsin by the name of Mel Lightner.

Dr. Lightner drew applause from the crowd as he spoke truth to power.  He identified himself as the parent of a student with special needs, as well as a school administrator.  And he reframed the education of students with disabilities in these words:

I do want to make one comment before I get to my question, and I don’t know if the gentleman up there meant this, but you said special education is a burden – that’s what he said, is a burden to school districts. 
Actually it’s an obligation, a responsibility, and it’s an HONOR to educate children with exceptional educational needs or special needs.

As the applause swelled, Dr. Lightner moved to his next point, to take on and expose the special needs vouchers, a harmful ALEC proposal that was blocked in Wisconsin last year.  Unfortunately this year it's been slipped into the 2013-2015 state budget where it's even harder to kill, greased with barrels-full of out-of-state campaign cash.

You should listen to the audio clip itself to hear the scorn drip from Dr. Lightner's words as he speaks of the special needs "scholarships," as they're called in the budget, as he tears apart the manufactured demand for this proposal that did NOT originate in the communities of Wisconsin.  Here is the transcript:

By the way, my name is Dr. Mel Lightner, I’ve been a school superintendent for twenty years in the state of Wisconsin – and I am alarmed and shamed at the movement to privatize and de-fund public education.  I think that’s the national movement, and at least two of the people up there are part of that movement in my eyes.  Kudos to [Sen.] Jennifer [Shilling, also of the panel], who’s a strong advocate for our children.  
Ladies and gentlemen, we are at the crossroads in the state of Wisconsin.  And I want to get back to the special education issue, because I have a special needs child.  Here’s my question.  My question is this: Special education “scholarships” or vouchers, private school vouchers, we have a mass of Wisconsinites who have come to you and said “LET’S DO THIS”?!? 
I don’t see it.  I don’t see it in my community, I don’t see it in the state, I don’t think you’re being responsive to the Wisconsin people.  You’re part of a national movement that is hunkered down and coming through with massive private dollars.  I think that’s where you are, and my question is: Is that not the case?  [Applause]
I wish that I could tell you that Rep. LeMahieu and his fellow panelist from the Joint Finance Committee, Sen. Alberta Darling (R-River Hills) saw the light and were swayed by Dr. Lightner's words.  Alas, this was not to be.

Senator Darling didn't address the source of the voucher legislation, responding with rote talking points about "choice."  Even worse, Rep. LeMahieu defended his use of the word "burden."  He didn't really mean "burden," you understand, it's just that special needs students cost more, which makes them a financial... well, BURDEN!  He kept using that word, over and over, just like his counterparts in shameful years gone by.

It's not a burden, Rep. LeMahieu.

These are our children.  And in the words of Dr. Mel Lightner of Pulaski:

It's an obligation, and it's a responsibility, and it's an HONOR.

Stop Special Needs Vouchers, Wisconsin!
(Click on the link to learn more and to join the movement...)

Thursday, March 7, 2013

She Told Me, I Listened

She pulled down her pants this afternoon, in the middle of the living room.

I took her to the bathroom, where she promptly peed on the pot.

She told me.  I listened.

So small.  And yet, I can't help but think that the earth moved on its axis just a little bit!

Friday, March 1, 2013

A Letter on Sequestration

I sent a letter this morning to four people: President Obama, Senator Ron Johnson, Senator Tammy Baldwin, Representative Mark Pocan.

Dear President Obama,

Yesterday afternoon, my husband and I sat down with a team of seven educators and administrators to write this year's Individualized Education Program (IEP) for our daughter's upcoming school year.

Our daughter Joy is a cheerful, bright-eyed second-grader, full of energy and laughter. She can ice-skate, she can snow-shoe, she can manipulate an iPad like nobody's business! Joy also only speaks a few words. She has a sobering catalog of developmental challenges, including autism, epilepsy, and a rare genetic condition called Linear Nevus Sebaceous Syndrome.

The team around that table had been working with Joy since the start of the school year, putting in untold hours above and beyond the school day to make our daughter's education possible. Tears threatened to flow as we evaluated Joy's phenomenal progress this past year, and pegged her reading-goal for next year to the emerging-skills level for first grade. First grade reading skills, for a child who as a pre-schooler was unable to imitate, unable to do a 3-piece puzzle, unable to follow most one-step directions!

And then we returned home, and read this evaluation of the effects of sequestration from the National Council on Disability:

* $978 million in comprehensive funding cuts would affect 30.7 million special education students.
* Funding for special education, specifically, would be slashed by nearly $600 million, reducing supports for students with disabilities to 2005 levels.
* Federal funding for the Individuals with Disabilities Education Act (IDEA) will be reduced by 28 percent, totaling a loss of one billion dollars.
* Close to 15,000 special education teachers could lose their jobs resulting in larger class sizes.

Tears DID flow as we considered the impending devastation: to our daughter's progress, to the educational prospects of so many children with educational challenges like hers, to the future of so many beloved young ones.

Federal funding for the IDEA has fallen short of its promise ever since the program's inception. Our schools are already patching services together out of insufficient resources; in Wisconsin, the public school system is reeling from a massive two year budget cut in the last cycle.

We fear that this will be the blow that shatters special education beyond repair, and truly handicaps our daughter's future.

Please, Mr. President, please do everything in your power to halt these cruel, senseless sequestration cuts!