Wednesday, November 5, 2008

Jeff's Comments On Article

Jeff had a lot of friends and people that he works with write in and stand up for him. These people have their own agenda and are not working within the autism community. They won't even allow someone to disagree with them.

Dear David,I saw your article online and in print and have received calls and e-mails on it. As I said during the interview that I granted you in my office at the Capitol when you confronted me last week—with no notice—you are, no doubt, a good writer. Like a colleague in the House who knows you said, you ought to be writing for a bigger paper. For a Pitch article, which is known for being alternative and on the edge, I thought you were pretty fair and balanced and quoted me very accurately.

While some of my Republican colleagues (Democrats too) and friends have been the target of outright hit pieces by the Pitch and were grossly misrepresented, I thought you would be more fair and reflect the genuineness of my passion to fight for the disabled after our 30 to 40 minute interview.

I think you did bring out the sincerity of my motives to advocate for the disabled that is inspired by my daughter who died. During the year we had with her, it is as if time stood still. She required 24/7 around the clock care with oxygen, monitors and alarms by the bedside. But, as my oldest son said, who was 12 when she died, it was the best year of our lives when we had Rebekah with us—perhaps the hardest, but the best.

I could never have comprehended losing a child—and still can’t. After Rebekah died, a man who lost his daughter gave me some wise advice—what he was told by another many who lost a daughter too—that you can fall into bitterness and pull everyone around you down with you or rise up and make your life a memorial and tribute to your child that died.

During the year we had with Rebekah—for which we hoped would be a lifetime—we experienced just a little of what families with special needs children go through and it does, as you wrote, “inform” my passion for what I do now for them in the Missouri House and will continue to do to fight, advocate and legislate for the disabled.

I would offer a few observations in response to your article. First, let’s remember the context. You received a forward of an e-mail that I sent to four trusted allies in the disabilities community whom I work with for the disabled. They wanted to forward out a letter to their family and friends in the disabilities community. Someone who received that e-mail obviously forwarded to the Pitch.

Secondly, I would submit that your article took my letter out of context. You quoted my letter as saying, "Fighting for individuals with disabilities — especially children — and their families is my highest priority. This passion is driven by our 7th child, Rebekah, who died November 26th, 2002 from complications of Prader-Willi Syndrome at 11 months and 18 days."

I, and many in the disabilities community, who take strong exception with the article (and I hope the Pitch will publish their responses), do not at all see my above quote as “connecting my request for money to the death of my daughter” as your headlines in print/online and the article imply. I would see doing so as inappropriate and am careful as to when and how I mention Rebekah. The only reason I included her picture in the e-mail is because the Kansas City Star had told me that same day I wrote and sent the e-mail that her story would be on the cover of their Sunday edition the next day—on March 30th.

What I was doing is simply sharing that the basis of my passion for the disabled is driven by my disabled daughter—period. I would have wanted anyone who might receive that forward to understand my genuineness and sincerity—that I am not simply some stereotypical politician telling them what they want to hear to get money, but that I am passionate and driven for the disabled from personal experience.

As you quoted, “to continue my fight for the disabled and their families, I need to raise significant funds for my re-election” and it is a “reality of politics that in order to be re-elected, you’ve got to raise money.” The four allies for the disabled that received my e-mail—three of which have developmentally disabled children and one a grandchild—forwarded my letter out with a cover letter from themselves. We would have thought the recipients would be more trustworthy than as to forward the e-mail to the Pitch. Oh well. I am glad you got the story. I think others would have been far less fair.

As I told you, I love public service and disdain politics. I refuse to exercise the luxury some of my colleagues from both parties do of receiving tens of thousands from special interests. I would rather receive 1000 $30 contributions from grassroots in the disabilities communities—thereby giving them a stronger influence in Jeff City—than to receive 100 checks for $325 from special interest. The most meaningful contributions we ever received in my non-profit work were not the six-figure donations, but the 50 cents a month for nearly 20 years received faithfully from a single woman with disabilities—like the widows mite.

Where I think the real crassness and exploitation in this story may have happened is when the Pitch editors chose to sensationalize your storyline with a headline to “hustle” papers at the expense of my daughter’s death and my public service. I often share her story—whether encouraging organ donation for lifesaving transplantation or research or for the disabled—because it honors her and impacts my hearers and readers and helps them understand my personal experience and passion for those issues.

The only big disappointment in your article is quotes attributed from an autism advocate and constituent as saying I refuse to meet with that group unless the event is held in public and that I take credit for the work they are doing and that everything I do is to further my political career. I have devoted multiple meeting and countless hours to meetings with that person and their group.Many others in the autism and disabilities community knows those assertions and mischaracterizations you attributed to that person are not at all accurate. I have met with that person and group multiple times—at the Capitol more than once, repeatedly three or more times in area restaurants and at a church where they meet, and have communicated with them by phone and e-mail as well as in education forums—dozens of hours in all.

The input I have received from them has influenced the three autism related bills I have filed this year—two of which are being heard in the health care policy committee this Tuesday. Many other autism and disabilities advocates and groups I work with are greatly dismayed by this and understand that no Missouri legislator is more pro-active on autism and special needs than me—and I am just getting started.

As far as your words of wisdom to consider Ann Coulter’s slams on John Edwards talking about his son who died, I would not view Edwards honoring his son’s memory as politicizing like Glenn Beck implies Cindy Sheehan did. In either case, I would guess neither Ann Coulter or Glenn Beck—nor the Pitch editors—have ever lost a child like John Edwards, Cindy Sheehan or I have. If they had, they might not be so crass and disrespectful themselves. But, Ann Coulter sells books and the Pitch “hustles” newspapers.

Apart from the disappointment in the article, I thought you did a pretty good—fair and balanced—job. It would be tempting to become angry at the Pitch for exploiting my daughter's death, but I realize the Pitch has done much worse against others, and--as public servants--we are often the targets of such misprepresentations. So, write on David.

Jeff Grisamore

Comment by Jeff Grisamore from Lee's Summit, Missouri on Apr 12th, 2008, 15:16 pm

I stand by my comments. I just spoke with Representative Grisamore on Saturday and he was asking me to send him more information so that he could write more bills.

I recently ran for school board and my platform was special education. My only issue was the education that our children are not getting. It was the perfect opportunity to help children with special needs. Representative Grisamore didn't help at all with my campaign. When I asked him why he said that I didn't ask. I recently had an event at Beauchamp's and Representative Grisamore found out about it. When I found out that he was coming I asked him to not use this night as a night to campaign. He didn't respond to my email and he went from table to table talking about Rebekah and campaigning. I told him that night that my campaign could use help.

Here is what I wrote to him."I'm glad to see that you plan to come to dinner and support the Autism Alliance. It is a worthy cause. Will your whole family be attending? It will be a nice evening out for the family. The event is from 6:30-9:30. Folks are coming and going as they please. There is no certain time to be there. Hopefully the place will be full, but the wait shouldn't be too long. It will be dinner as usual, but with a smaller menu. That way it will be easier for the staff to get people in and out. There isn't going to be a formal meeting or time for speaking. We will just be serving food and giving a portion of the proceeds to charity. The Alliance will be signing people up for the walk and Royals tickets.

I sure could have used your help with my campaign to help children with special needs in the Lee's Summit district. As you know, that's how I ran my campaign and I have gotten slammed a lot. There haven't been a lot of public officials willing to stand up for our kids and I feel like the campaign could have been better if people weren't so afraid of standing up for what is right instead of standing with the majority. But, I feel like I have done what I know is right in my heart and that I can sleep at night knowing that I didn't let the administration beat me into being silent. At least I got the message out that Lee's Summit is not doing a good job with special needs. Even if everyone says that those kids just don't matter.

We are going to have some celebrities at our event. They are mostly from the Chiefs and Royals. I'm so pleased that we were able to get some faces that folks will recognize. It will really help out the Alliance. See you on Thursday."

Comment by Sherri Tucker from Lee's Summit, MO on Apr 15th, 2008, 10:03 am

In response to the above comments under number six, I am disappointed to read Sherri Tucker stands by her comments in the article. The many other autism groups, advocates and service providers know the sincerity of my passion to fight and advocate for children with autism and their families and those who care for them. This is my highest legislative priority and I am currently sponsoring three bills on autism.

To read that Mrs. Tucker "stands by her comments" that I have refused to meet with them was thoroughly rebutted in my 1st comment above. To read that those I have worked so hard to serve think "everything I do is to further my political career" is indeed disappointing.

I told Sherri that I have been "helping her by working 18 hours a day in Jefferson City to pass autism legislation since January." I also told her I would be e-mailing various autism groups as we continue to work on legislation, especially related to IEPs.

While I have gained much inspiration to advocate for Autism through the multiple meetings and hours I have spent with Sherri Tucker's autism support group, the three bills I am sponsoring did not come from them. Two of them are recommendations of the Missouri Blue Ribbon Panel and the other autism bill on education was developed in collaboration with educators.

Concerning the event at Beauchamps, I received an invitation to the event at my Capitol office and was eager to attend to show support for the autism community that we are working so hard to serve in Jefferson City. I was not told anything about not using the night to campaign and would not have--and did not do so. The election is seven months away. I am workind day and night to serve my constituents and, especially, those in the autism communities.

I have thoroughly responded to Sherri's e-mail that I received after that event and she received before writing the above post. During the event at Beauchamps, I did not "go from table to table talking about Rebekah and campaigning."

What I did do was talk to Bill Regan, a friend I know through mutual friends and Langsford Boys Home at one table, talked to Chase, a reporter from the Journal, who wanted to ask me some questions, and said hi to other friends I knew at another table, then spent the rest of my time there sitting at one table with Mike Allen and others who I know through EFECT (Encouraging Families with Exceptional Children Together). My campaign and Rebekah were not discussed.

It is very sad to be be so grossly and repeatedly misrepresented in a public forum like this by those I have worked so hard to serve. However, I can assure you this, no matter how much misrepresentation and antagonism I experience from a few in the autism community, I will continue to fight and advocate for children with autism and their families and those that care for them and am encouraged by how many groups in the greater autism community support our efforts on their behalf in Jefferson City.

We had a very encouraging hearing and press conference today on my autism insurance bill (HB 2265) and the NBC Today Show was here to film all of it for a story they are doing on Molly Schad, who was featured with her son with autism in a cover story in yesterday's St. Louis Post-Dispatch.

Comment by Jeff Grisamore from Lees Summit on Apr 15th, 2008, 22:44 pm

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