Our Vote, Your Vote

Dear Family and Friends,

I've struggled for a while with whether or not to "voice" my opinions on this election here and with whether or not I should "ask" you to support the presidential candidate that disability advocates' research, as well as my own, leads Jon and I to support. With the election a mere day away, my decision to finally discuss our beliefs and how we came to our choice here may be mute action. Nonetheless, I feel compelled to do so for Avery and for all the other families caring for a child with special needs. My intent is not to offend anyone, and I hope you will remember that should you choose to read on. Merely, I am sharing another perspective…one that you may not have considered…or one that you may not be able to fully appreciate having not lived "our" life or having not worked with families like ours on a daily basis as I do. Because of the beliefs we carry, the research we have done, the information provided by the leading disability advocate groups, and with the knowledge of what raising a child with special needs is like for us and for other families, Jon and I will be supporting Barack Obama and Joe Biden on Election day. We hope that, if you are still standing in the middle, trying to decide which way to go, that you will consider families like ours when you cast your vote. Because it does matter…it matters greatly to many families like ours. To just pull the lever and think that it doesn't really matter in the end…well, it couldn't be more wrong to think that way. We don't expect you to do so blindly or just because we've asked you to. We hope that you will take a moment to look at the reasoning behind our decision to support Barack-Biden and then take a moment to do some of your own research if you haven't already.

 

First off, I want to address Sarah Palin because a lot has been said about her selection and the fact that she is raising a child with special needs. On the surface, to many without a child with special needs, it may seem a fore drawn conclusion that a family like ours would be drawn to supporting this candidate because of our "shared" experience with her. For Jon and I, and many other special needs families, this is simply is not the case. We have chosen not to support McCain and Palin for many reasons, and none of them have to do directly with our personal conflicts with how she has chosen to proceed at this time in her family life. While I do not agree with her choices as a mother, they do not mean that she shouldn't pursue her personal ambitions or that she would not be a qualified leader. The problem arises when she voices that families like ours will have a friend and advocate in the White House if we elect she and McCain to the highest offices in the land. On the surface, if I take her at her words, that is appealing…I admit…she had my attention at the Republican Convention. However, I question that sincerity and her draw on our "shared " experience for many reasons. She is only about 6 months into this journey, and no matter how well anyone thinks they've accepted things or know where things are going to go…they don't. She doesn't know what it is like to fight the battles that so many families like ours have, and likely never will because of "who" she is. It is so very easy to say the words that so many have been waiting to hear from a politician, especially one who appears to "share" the experience. Our problems with this pronouncement from Mrs. Palin goes even further though. Until recently, she and McCain never made any specific mention of how they would be an advocate to our families in the White House…no policy statements at rallies or in any of the debates. In fact, much of what was mentioned in the debates did more to undermine this statement. Saying something alone does not make it so. There must be plans and action moving forward. And a history of inaction can speak volumes. Recently, Mrs. Palin took to offering some guidance to our families as to how the McCain-Palin administration would advocate for our families. She stated that they would call on all the best disability awareness and advocacy organizations to help them make our nation "better" for families like ours. Again, sounds great on the surface…but, the truth is that these groups have been around for many, many years and available to politicians and administrations as a source of information and guidance on how to serve our families and meet our very real needs. Unfortunately, the Republican Party has not a history of consistently working on significant disability measures or reforms that really affect the everyday lives of families such as ours, and as such, many of these groups do not support this McCain-Palin ticket. In fact, they have supported many policies that make every day a little harder or a little more frightening. To be fair, both parties' candidates have policy sites where you can read about their policies on disability issues that affect our nation. Please read them here: Obama-Biden and McCain-Palin. For a comparison between the 2 tickets plans on disability-issues, please see this document: 2008 Presidential Candidate Positions on Disability-related Issues.

 

It would take me days to fully describe the struggles families like our, and families worse off than ours, go through daily and in the course of their child's lifetime. None of it is black and white…and there are no simple and easy explanations. Without living it, it is impossible to truly know and appreciate. And that it the honest truth. So, here I touch on just the biggest issues, though they all have so many branching issues and ramifications that I am afraid they are rather simplified in explanation.

Every day, families like ours struggle with:

1. Getting their child access to the education they need and in the format they need it as entitled to by law, also known as special education;
2. Getting not only access to heath care for their child with special needs, but appropriate health care that will provide rehabilitative services that aren't limited to peanuts and that doesn't force them to remain in poverty to cover just that child;
3. Having access to the supports and services they need to care for their loved at home long-term (at a significantly lesser expense, even with those supports and services) instead of the state caring for them in state-ran and financed institutions (wait list in Indiana are 10 years long, and in other states, even longer);
4. Having their child valued as a human being and for what they can do, instead of what they cannot do;
5. Having true accessibility throughout our society and meaningful inclusion in it for their children as well;
6. Staying financially afloat with all the additional strains that are placed on their income (which is often limited because they are caring for their child at home and in the community);
7. Maintaining a strong marriage with all the additional stress having a child with special needs brings to it (it should be no surprise that statistics show a higher divorce rate in families like ours);
8. Maintaining our personal health, as most of our energy and resources go towards helping our child reach their highest potential;
9. Staying connected to our "typical" children so that they don't feel cheated of their childhood and starved of our attention;
10. ….etc, the list could go on and on.

 

In Indiana, special education is governed by what is known as "Article 7" law. The Federal Gov't legislates what States must provide, at a minimum, to students qualifying for special education. This Federal law is known as IDEA (Individuals with Disabilities Education Act). States can adopt regulations which provide more…but they can't do less than the Fed has defined. Why is this important? Well, the Federal Government is defining for States what must be provided, as they should or there'd be a whole different set of problems, but not providing all the funding it promised. Now, States are expected to comply with the rules, but without the full monies set aside and promised for such purposes. This is not right. IDEA must be fully funded. Obama has supported this historically; McCain is only recently in support of this, but at a slower pace (5 years until full funding achieved under his plan). Voucher programs that support sending funds to private school placements actually put children in special education at greater risk, b/c they are left behind in the underfunded and understaffed public schools that were abandoned by general education students in favor of these private schools through vouchers. There is no incentive for these private schools to take our children in special education into their programs and provide them with an education appropriate to their needs (as required by law in public schools). Vouchers are nothing more than a band-aid and do nothing to fix the actual issues plaguing our nation's public schools. With adequate funding, our public school can provide the education that our children in special education need and as required by law. Hard decisions must be made and schools must be held accountable, but only after having been given the tools to actually have a chance at succeeding. Parent's must have access to health care for their child with special needs that does not force them to live in poverty to get the coverage their child needs. Parent's must have the support and services to care for their child at home when first needed, not 10 years later.

 

So many of you watched Jon and I struggle with the birth of our sweet, sweet Avery. So many of you dug deep into your hearts and your pockets to support us, both financially and emotionally. Because of that, we survived and even thrived to some degree. What Jon and I want you all to realize is that not all families are like that. Not all families are that supportive. Not all of them have the financial means to help in such meaningful ways. We were lucky to have you all…and blessed that you cared enough. But, every day, there are families like ours, that are not keeping their heads above water…that are having to make decisions that were even harder than ours to allow doctors to remove half of Avery's brain. Families choose to give up their children, not because they want to, but because they have no alternatives. I know that many of you felt that by helping Jon and I, you received a far greater gift in return. The same is true for helping others…even if you don't know them.

 

This presidency is not about race, it is not about gender, and it's not really about age or political party either. I want to point out that none of these candidates have meaningful executive level experience (Palin's current stint as Governor of Alaska could be arguable, but she governs a state whose total population is far less than any major metropolitan US city). It is not always about experience anyway when it comes to the Presidency. It is more often about character and judgment. It is about the ability to bring informed people together to make informed decisions and policies. It is being big enough to listen to a counter opinion and even changing your mind when new facts warrant it. It is about the ability to lead and to think bigger than one's self. It is not about pro-life or pro-choice, it is about preventing the need for such a decision. It is not about pro-guns or anti-guns, it is about protecting innocents from gun harm at the hands of felons or the mentally ill. It's not about marriage between a man and women vs. marriage between persons of the same sex, it is about the right to obtain benefits and visit your significant other in the hospital. It is not about same-sex marriage ruining the sanctity of marriage in our country…it's a divorce rate of 50%+ in heterosexual couples pushing that sanctity to it's limits. In the end, it is about tolerance, understanding and compassion…about doing what is right by each other. It is about taking care of each other, because we do not live in our own little microcosms. What we do or do not do DOES affect others. Our neighbor's child's quality of education does affect us. The financial state of our neighbors and communities do affect us. We are not isolated to only our deeds and our successes and failures. Each sends a ripple into our community and our greater collective whole. It is so easy for us as religious persons to stand up and profess our righteousness through our religious beliefs, without really evaluating if we are truly living the life God meant us to. Did Jesus leave those in most need behind? Did he look at color of skin or place in society as a means to value or devalue others? Did we all not come from the same maker…black, white, brown or red skinned as we may be?

 

Jon and I support Obama because he has a meaningful plan to improve the lives of individuals with disabilities and the families caring for them. Not only is his plan more detailed, but it is also more thught out and better aligned with what families like ours are REALLY needing. We support Obama because he professes and speaks of nothing but unity and of standing up for those who need it most. We support Obama because he has shown that he is a capable leader by answering questions time and again with real answers and with specifics and with an honest and knowledgeable zest. We believe that he is a man of his word and that we would truly have a President who is looking out for ALL of us, not a chosen few. His skin color makes us no difference. His gender makes us no difference. His political party makes us no difference in so far as the person he has shown to be. For Jon and I, the risks to our family and other families like ours is just too great to vote otherwise. In fact, in our opinion, the risks are too high for ALL families for us to vote differently. Taxes are an inevitable. There are some things we must pay for, as a collective good for all. Some things government can do better than we can alone…and some things they must. It is not about higher taxes and more spending. It is about fairness in taxes and about smart spending and smart budgeting. New spending can be offset by reductions in ineffective and wasteful spending, such that no new net spending results. To imply that new spending will increase the overall budget is nothing more than trickery. We believe that Barack Obama has the right plan for America and no matter how many distortions have been made about what he has said, he has continued to say the same things time and again and with the same clarity. If there is any confusion about what he has said or what his plans are, it is from those who seek to distort them for their own purposes.

Comments

[sunshine]

Amen

[Jennifer Jones]

Thank you so much for voicing an opinion that another mom to a precious special needs child shares with you. I could not have said it better myself, and have often struggled to put these thoughts into words when sharing my feelings with others. You are a talented writer, a gifted speaker, and one heck of an advocate for our Sweet Pea. Thank you again for being a guiding light, a beacon of strength, and a true friend. Love ya girl!