May 3, 2012
President Barack Obama
1600 Pennsylvania Avenue NW
Washington, DC 20500
Dear Mr. President,
My name is Jess Wilson. I have the honor of meeting with your friend and advisor, Mike Strautmanis today. Mike and I share a bond that I wish were far more unique than it is—we are both parents of autistic children. I have asked Mike to pass this letter on to you.
Yesterday I visited the Smithsonian Institute’s Museum of American History with my husband and my two daughters—Katie , who is eleven and Brooke, who is nine and has autism.
I was moved to tears by a live exhibition that we saw there. A young woman played the role of a civil rights activist who took part in the Greensboro sit-in so many years ago. Since you have daughters of your own, I know that you won’t be surprised when I tell you that Katie rolled her eyes at me as she saw my tears begin to flow. But I couldn’t help it. Standing there listening to this young woman sing, “I’m gonna get my civil rights someday” was simply too much for this mother of an autistic child to bear.
You see, Sir, I fight every day for my little girl to be able to sit at that proverbial counter. I fight every day for the services that she and others like her so desperately need—not just to exist in this world but to fully participate in it.
I fight for a world that will no longer dismiss people like her as no more than a litany of challenges but will instead delve deep enough to know her, to value her, to celebrate her and to help her to find a way to contribute to it in return. Because, Sir, she has so very much to contribute.
I cried listening to that young woman sing because her words fortified my belief that the world that I seek is possible. Because our world—the world in which you are our President—is so dramatically different from the one in which those students made their brave stand for equality; so too the world before us can be radically different for my daughter than the one she inhabits today.
I believe in this nation.
I believe in an America whose people are not divided by the illusion of political difference, but who are instead united by their desire to make this world a better place for our children.
I believe in an America that is not torn apart by religious difference but instead thrives on its insistence that respect for that very difference is exactly what makes us who we are.
I believe in an America where every single human being is not just tolerated but valued, supported and celebrated.
I believe in an America in which we collectively treat every child as if they were our own. Because they ARE our own.
I believe in an America whose children grow up knowing that they have the ability to contribute to her success and to reap the rewards of that contribution—regardless of the color of their skin, the city in which they live or the intrinsic challenges that they may face.
I believe in an America whose people come together to support the 1 in 88 individuals who, like my daughter, has autism because they see that it is simply unconscionable not to.
I believe in the creative will of our people to find innovative ways to unlock the potential of those with autism and other developmental disabilities. I believe in the tenacity of those individuals themselves along with the legion of parents and doctors and scientists and educators and therapists who support them. I believe in our business leaders and our Main Street entrepreneurs. I believe that together we can create partnerships that will change the way we view disability and potential.
I believe in the autism community’s ability to do the work that it takes to make change happen from the bottom up. I do. But no matter how much I may want to believe that we can, I know that we cannot do this alone. If we are to create the America that I believe is possible, we need everyone to participate.
And we need you.
We need you to meet us halfway. We need you to lead with a strong, clear vision of the future that we know is possible. We need you not to follow the tide, but to work with us to shape the tide. We need you to talk about why it is so important to the future of this nation to invest in the autism community. We need you to talk at every turn about why we as a society must value—truly, deeply and systemically value—the potential of people with autism and to convince the non-believers why it is so richly worth the cost—from both humanitarian and fiscal perspectives—to do everything in our power to unlock it.
We need you to help us address the dramatically disparate levels of support for people with autism around the country—from state to state, zip code to zip code and school to school. We need you to help us create a system in which a child’s services no longer hinge on their parent’s ability to advocate effectively for them. That is simply not what this country is—or should be—about.
We need you to help us fund Early Identification and Intervention programs—the greatest hope for the next generation. We need you to help us create ABLE accounts allowing us to save money for our own children so that the government does not end up supporting them by default when we simply can’t.
We need a federal autism insurance mandate. I know that mandate is a dirty word these days. Call it what you will to make it more palatable, Mr. President, but there’s got to be some kind of uniformity in order to protect the rights of autistic individuals to receive care no matter where they live or what they or their parents do for work.
We need you to help us remove the barriers to building feasible, comfortable, safe housing for our children as they run headlong into adulthood. We need you to help us offer incentives to those who create employment opportunities for autistic adults, harnessing their unlimited ability to contribute to our society.
We need you to help us care for our nation’s 23,000 military dependents with autism. We need you to take autism services out of ECHO and put them back into TRICARE as the medically necessary treatments that they are so that the children of Wounded Warriors no longer LOSE ACCESS TO TREATMENT upon their parent’s required medical discharge and twenty-year veterans don’t have to step back into battle because they know that if they retire, their children’s care retires with them.
We need you to help us promote research and a renewed and reinvigorated commitment to real scientific inquiry and critical thinking. We need the money that you promised to fully fund IDEA. We need sweeping legislative change.
Last year, I wrote a letter to you asking you to light your house blue for World Autism Awareness Day. In that letter, I wrote the following:
Your girls are beautiful, Mr. President. They are poised and confident, graceful and self-assured. You must be incredibly proud of both of them. I ask you, Sir, what if Malia or Sasha had autism? What would you do to help them? I’m guessing the better question is, What wouldn’t you do?
I believe in an America in which we collectively treat every child as if they were our own. Please, Sir. If my daughter were yours, what would you do?
Please don’t hesitate to contact me. I would be honored to speak with you and to help in any way that I can.