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Upon taking office last year, Missouri State Rep. Jeff Grisamore went to work for the vulnerable. The first bill he sponsored would have expanded the number of families eligible to receive child-care assistance.

Grisamore, a Lee's Summit Republican, didn't let party politics stand in the way of what he likes to call "responsible compassion." More than half of the bill's 56 co-sponsors were Democrats.

The bill died in committee, but Grisamore has continued to work on behalf of people who face adversity. Five of the 10 bills he has sponsored in this session concern the disabled.

Grisamore says the disabled and the mentally ill should receive the first portions of the state budget. "Instead, they end up having to fight for crumbs off the table," he tells me.

It's about 6 p.m., and Grisamore is sitting in a chair in his office at the Capitol, a Diet Coke within reach. The House has broken for dinner. With a long list of bills on the docket, Grisamore expects the workday to last until midnight.

This is a busy time for state lawmakers. In addition to their legislative duties, there's an election to consider. Grisamore recently sent out an "urgent message" asking for campaign contributions.

"Fighting for individuals with disabilities — especially children — and their families is my highest priority," the e-mail began.

Grisamore then connected his request for money to the death of his daughter.

"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." A picture of Rebekah appears at the top of the e-mail, along with Grisamore's head shot.

Prader-Willi syndrome is a genetic disorder characterized by obesity and decreased mental capacity and muscle tone. At birth, children who suffer from the condition appear small and floppy. An intense desire for food develops later, leading to excessive weight gain and associated health problems.

Rebekah suffocated after her body failed to digest a bottle of milk. Grisa­more and his wife, Mary, arranged for her organs and tissue to be used for research. A feature story last month in The Kansas City Star explained that she was the only infant with Prader-Willi available for study.

Grisamore tells me that Rebekah's life and death inform a lot of what he tries to do in Jefferson City. A Bible-school graduate who is active in mission and nonprofit work, Grisamore says he wants to be an "advocate for the elderly," "a champion for children" and a "defender of the disabled." Grisa­more says his daughter's plight "took [his] empathy and commitment for families with special needs to a whole new level."

Grisamore's commitment is admirable on its face. But at what point does his talking about his daughter become exploitive?

Last November, Grisamore wrote an "As I See It" piece for the Star stressing the importance of organ donation. The column began with a description of the Grisamore family weeping, praying and launching balloons at Rebekah's grave site.

The recent feature story about Rebekah's gift to science closed with Grisamore talking about organ-donation legislation he's trying to pass.

And then comes the fundraising letter.

"To continue my fight for the disabled and their families, I need to raise significant funds for my re-election this year," Grisamore writes.

Encouraging people to donate their organs is one thing. Using Rebekah's story to hustle for campaign cash seems to be quite another.

Grisamore tells me that he sent the message to four people who work with and on behalf of those with special needs. But with a boldface request that readers forward it, the e-mail was obviously intended for a wider audience.

He says he's trying to appeal to a base of the disabled and their families. What others might find crass he describes as an effort to build grass-roots support. "The reality of politics is that in order to be re-elected, you've got to raise money," he says.

A suburban evangelical and father of eight, Grisamore can surprise you. His coherent rejoinders to criticism on left-leaning blogs suggest a brand-name law degree, not matriculation at Trinity International University, a divinity school in Deerfield, Illinois. (Last fall, lawyer and Democrat Steve Bough lauded Grisamore for responding “thoughtfully, intelligently and professionally” to a post on Blog CCP that took Grisamore to task on a variety of issues, including his pay as a nonprofit executive.) Grisamore's gelled hair and five o'clock shadow bring to mind a raffish lobbyist more than a churchgoing Republican.

And unlike many conservatives, Grisamore believes that government can accomplish things.

He talks about a constitutional amendment to mandate spending for those with disabilities and special needs. "I'm here to create a revolution for these folks," he says.

But one advocate for autism awareness regards Grisamore with the mistrust that nonbelievers hold for televangelists.

Sherri Tucker, co-founder of the Lee’s Summit Autism Support Group, says Grisamore has refused to meet with her group unless the event is held in public and he takes credit for work that her group is doing.

"Everything he does is to further his political career," she says.

Tucker says she's also put off by the frequency with which Grisamore talks about Rebekah. She says he mentioned Rebekah at a rally for disability rights in Jefferson City last month.

Grisamore says he hopes that his family's experience can be an inspiration to others.

Grisamore tells me that he regrets having offended anyone with the letter. But given the chance to second-guess his decision to include Rebekah's story in a solicitation for donations, Grisamore says he would not have done anything differently.

"Rebekah is very much a part of all this," he tells me.

Still, Grisamore might be wise to consider the hell that some right-wing commentators have unleashed on other public figures who have lost children. Ann Coulter once suggested that because John Edwards spoke about his son Wade so much, he needed an "Ask me about my son's death in a horrific car accident" bumper sticker. Glenn Beck called grieving Iraq War mother Cindy Sheehan a "tragedy pimp."

These attack artists might not be the most mainstream Republicans. But they've undoubtedly helped members of Grisamore's party dominate many statehouses — where, collectively, they've made life tougher for the vulnerable people for whom Grisamore says he's fighting.

Click here to write a letter to the editor.

Write Your Comment show comments (10)

  1. 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 — April 12, 2008 @ 03:16PM

  2. As a mother of a beautiful little girl with a disability, I would like to thank Representative Grisamore for being such a powerful advocate on behalf of my daughter and all of my friends in the disability community. Representative Grisamore has noticed the need for change when in comes to the disability community and is acting on it.

    I have never felt he was "using his daughter's death" to further his career. To me, he does what he does to carry on her legacy. She is the reason for his passion. Unless you have a child with a disability, there is no way that you can possibly understand all that come with raising them. May be he only had a short while with his beautiful daughter Rebekah, but in that small amount of time, Rebekah touched his entire family in a way no one ever could and changed them forever. Spend an hour caring for a child with a disability and your view on what it takes to raise a child with a disability will change forever. You will find a new appreciation for it and it will move your very soul.

    Parents in the disability community are very passionate. We have to be. We have to be the voice of our children. We have to fight for everything for our children. Many of us are overstressed and under supported. Finally, we have someone who hears us and understands us. Finally, we have someone who has lived it who can relate and can educate those on both sides of the isle about the demands our families face. Our children deserve what any other typical child does. Our children deserve the ability to meet their education needs, to have their medical needs covered, to be respected just as anyone else in the community. Representative Grisamore sees that and is helping to do whatever he can while he is in office to change that.

    Representative Grisamore has opened his office to his constituents and beyond. He is working with us to make change. And change takes time. That is why he has asked for support. He wants to continue the work he is doing for our children.

    Every time we have met with him he takes notes about our experiences. He doesn't push us out of his office because he has too much to do. He spends whatever time is necessary to hear our stories. He emotionally connects with our experiences because he has lived them himself. If you don't think 11 months and 18 days are enough to truly understand the complexities of raising a child with a disability and to be touched by the beauty of a child with a disability, then you are wrong. He listens and understands. He then takes our stories and experiences and shares them with other legislators, and is attempting to push the envelope on behalf of our children. He is taking a risk at doing what he is doing. Personally, I take my hat off to him. I'm positive he is getting heat in a lot of places in Jefferson City, yet he continues to stand strong and fight for all of our children.

    I absolutely will support him for office because he is working hard for change. As parents, we can't do this alone. We need someone in Jefferson City who will fight for our children and I believe that person is Representative Grisamore.

    Representative Grisamore, I thank you for the countless hours you have spent with us and for the time you spend everyday you walk the halls in Jefferson City being our voice. Your are an honorable man.

    Amy Brockelmeyer

    Comment by Amy Brockelmeyer — April 13, 2008 @ 03:57PM

  3. I sent this tonight in response to the article. I am just sickened by the article. I have asked other to write as well. If we can bombard them with letters maybe they will get the truth.



    As a parent of 3 children with disabilities I feel so blessed to have Representative Grisamore representing the 47th district. Over the years I have developed relationships with many previous legislators. While they have all been willing to listen to my concerns as a parent of a child with disabilities none have tried to do as much as Representative Grisamore has during his time in Jefferson City. It is clear to me that having Rebekah in his life has given him the drive and passion for people with disabilities. Until you have experienced the life of raising a child with a disability you can not possibly imagine the physical, emotional and financial stress it causes on a family. It is for that reason that Representative Grisamore get's it and is willing to advocate for those that can not advocate for themselves.

    Comment by Tracy Damario — April 14, 2008 @ 08:48PM

  4. On March 29, 2008 I had the opportunity to visit with Representative Grisamore, Representative Yates and Representative Krause in Jefferson City. I was very appreciative of their time especially of Grisamore and Yates who spent more than 1 1/2 hours with us. I found out later that they not only supported us but they went against the party vote and acquired an additional $2 million dollars of special education services for the home and later the next week acquired an additional $2.5 million for early childhood special education. As you know our system is under funded for special needs children whether it be at home or school and I really believe that we have three strong advocates with us for this great cause. They truly are advocates for those with disabilities. I have an open door policy with them and feel they are willing to hear my opinions and not only be attentive but productive as we work together to help families of children with disabilities in Missouri. I can not thank them enough for their service and dedication to our children. I would be happy to support each one with re-election if I could.

    Comment by Rand Hodgson — April 14, 2008 @ 09:00PM

  5. I really wish The Pitch would target the many individuals and businesses that so often discrimate and exclude those with disabilities instead of spending their time writing articles that put a legislator working hard to improve services for those with disabliities. I have a son with a disability and am forever thankful to Reprsentative Grisamore and others that make disability issues their priority. When you have a child with a disability you rely on policymakers to create laws and make decisions to improve services for those with disabilities. Representative Grisamore has spent his time in Jefferson City advocating and educating fellow legislators so that changes can be made in Missouri for those with disabilities.

    Comment by Tami Devoid — April 14, 2008 @ 09:34PM

  6. 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 — April 15, 2008 @ 10:03AM

  7. 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 — April 15, 2008 @ 10:44PM

  8. Diagnosis of a loved one with a condition or disease can inspire family members to lead efforts for further research and/or to improve the lives of those enduring difficult challenges. Representative Jeff Grisamore and his wife experienced both the birth of a child with a disability as well as Rebekah's untimely death. Their heartfelt decision of organ donation is a continuing contribution for medical research. Bringing awareness of the importance of organ donation is to be commended. Those who critique the grief of parents having lost a child are presumptuous and unkind.


    Grisamore's intention to work on behalf of ALL disabled might sometimes be overshadowed by those who differ in how best to achieve common goals. Ms. Tucker's comment of being 'put off' by the frequency with which Grisamore talks about Rebekah and the mention of her name at a rally for Disability Rights Day in Jefferson City is petty. We should all be working to raise awareness of the need for more funding for the entire disabled community. Hundreds of disabled persons remain on waiting lists for day programs, respite care, transportation, etc. These people and their families are the ones entitled to feel “put off”.



    Legislators are known to support agendas of many organizations such as Right to Life, Pro Choice, NRA, AARP, NEA and Chamber of Commerce. We are naïve to think members of such organizations do not financially contribute to the reelection of legislators who advocate their particular cause. The developmentally disabled community is not represented by wealthy, influential organizations. It is represented by families, care givers, advocates, self advocates and Representative Grisamore. Seeking support for his reelection is warranted. Some people can find fault no matter how the request is made.


    The needs of children and adults with disabilities are being brought to the attention of legislators of both political parties by Grisamore. A more worthy public service career cannot be found when serving our most vulnerable citizens: the chosen career of Representative Jeff Grisamore.

    Comment by Judy Green — April 16, 2008 @ 07:13PM

  9. Dear David,

    I read this article and shake my head. I've had the honor of meeting Representative Grisamore, and I am totally impressed with his compassion. I am a 39 year old single Mom with Cerebral Palsy. I also have two sons with autism, ages 14 and 11. I am not in Representative Grisamore's district. During our visit, I offered to wait in the waiting room while the people in our group went in to talk with him. Representative Grisamore was gracious and kind enough to invite my sons and myself in to sit and visit with him. He could've very easily said, "Sorry, you're not in my district, so I don't have time for you." He did NOT do that. After speaking with others in my group, he looked me straight in the eye and asked, "What are your concerns? How can I help you and your sons?" That totally blew my mind away.

    As for Representative Grisamore speaking about his daughter, he does that for a VERY important reason. He is trying help us see that he has walked in our shoes. Ok, so let's look at this a different route. Here is my example, Let's say you are the founder of a Cerebral Palsy support group. Ok, now the new "rules" say you cannot ever speak about your child who has Cerebral Palsy. Ummm, excuse me, how are the other parents with children with Cerebral Palsy ever going to see that you have a clue about what Cerebral Palsy is if you NEVER can speak about your own child with Cerebral Palsy?? Representative Grisamore, I thank you for sharing your daughter's story over and over again. It does drive home to the people with disabilities that you are in the same boat with all of us.

    Kelly R. Knosby
    Lone Jack, MO

    Comment by Kelly Knosby — April 16, 2008 @ 08:47PM

  10. I live in Jeff Grisamore's district. We have spoken to Representative Grisamore on several occasions including the countless hours meeting with parents at Atlanta Bread (2x), our meeting place at Legacy Christian Church and at Dairy Queen. Our issues in the school district after his 2 years of serving as our Representative, have not changed. What is different in Lee's Summit at this time? We were told we would have round table discussions with the Governor, with the Superintendent and LSR7 staff that make Special Education decisions. We have never heard anything more about this. We were told that he was going to work on a pilot program here in Lee's Summit regarding Autism. We have heard nothing from Jeff until we went looking to him for answers. The families that are having problems in the school district want answers about where Jeff Grisamore is at helping them? What can he do for Special Education? We are pleased that Rep. Grisamore is pushing for Health Insurance Coverage for Autism and is working on other Autism Related work. He is an active and strong advocate for children with Autism and of children with various disabilties.

    Comment by Debbie Shaumeyer — April 16, 2008 @ 11:00PM

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