Each year, come August, there is that senseless humor that ends the summer. A feel good flick. It needs no justification other than the dog days of summer. And it is in those weeks that many of us cringe – a joke, with our child or sibling as the punchline. An angry letter. A night of sulking. Well, get ready for the movies to inspire you. TO lift you up. TO connect you…the movies are coming, the movies are coming…and I promise you will like it! I am so excited and can’t wait to give you details!
Dear Honorable Chief Justices –
Last year when the Supreme Court ruled in favor of corporate personhood allowing the formation of SuperPACs, I must admit I was disappointed. Yet, in the current argument against the Healthcare Reform, it certainly is instructive.
Businesses have similar rights and responsibilities as citizens. And at the same time these businesses have been mandated to buy products and services to meet compliance to the ADA. My company has a long wheelchair ramp that was installed to a door. We also have an elevator that rarely is used in our two-story building, and I recently heard an executive discussing the need to invest in services that would make our website accessible. While we are a corporation, my father-in-law owns a small business as a sole proprietorship that also must follow these laws. As the building owner, he must ensure its public accessibility. Because I have a daughter with a disability, I often get disability updates from the White House explaining how they are taking legal action against various non-compliant companies. In short, our Federal Government is making it compulsorily for business owners to buy goods and services that help minimize discrimination or segregation of a minority population.
While I am not a fan of the personal mandate, I am very much a fan of it allowing my child to participate in private health care by eliminating the exclusion for pre-existing conditions. She has never done anything that should give a company the right to blatantly discriminate against her. Her “pre-existing condition” is not due to carelessness or reckless action, but is simply a part of the natural variety of life. Just like the person in a wheel chair who can now work in many more locations, access to affordable private insurance would give my daughter the opportunity to participate in the equal protection under the law that previously rung hollow for her.
Each year my company pays for maintenance to our accessible features of our real estate and website. And each year we develop a budget that passes those costs along to our customers and shareholders. Each year, all of us citizens are paying, directly or indirectly, for accessibility products and services that the Federal Government has successfully mandated for decades. We do it because it is legal and we do it because it is the right thing to do, but most importantly, we do it because without it we could not protect the true promise of what it means to be an American – starting with equal protection under the law. If a grocery store refused to sell my daughter food, we would not tolerate it. Heath care is every bit as vital for her, and yet we allow private companies to discriminate against her and push that cost onto the tax payers. Forcing people to buy health insurance in order to ensure a non-discriminating policy is a logical extension of the ADA framework.
Before the Superbowl there was the NFL championship games. While functionally the same, it was a whole new level when it became the Superbowl. That is what the UN did with WDSD. So, to me, that was WDSD I, with many more Roman numerals to come.
It was an amazing day. My Facebook stream was full of activity that spilled over into postings today (like a boxing day present, for my friends in the UK). My Google alert was full of UN and self-advocate mentions. So, it was a very exciting day.
But when the evening got late and the kiddos went to bed, it was also a sad day. The sadness was a natural part of the happiness. They were bound in their creation. The happiness came from the hope for the change in the future. The sadness was looking at the 2012 at the end of the date. We live in 2012 and we must ask humans to let our children into mainstream classes and jobs and college and all that people with my last name have enjoyed for perhaps 100 years. The sadness of realizing we have to still ask for the equality and dignity that should be a natural part of the American promise. And then the circle turns again, and that sadness creates the excitement that we have the opportunity to make a real change in humanity and we have the power to do something that not every generation is so lucky to undertake.
It is an amazing spectrum of feelings mixed in this petri dish. From despair from to bliss. From hope to pain to hope again. But each day we are marching forward. Progress looks like huge leaps on the day a new law is passed or a big event occurs, but those events are the result of all the tiny steps between. Congrats to all of you, to all of us, making all of those tiny invisible steps that enable the next big leaps! Here is to a greater humanity tomorrow! Onwards towards WDSD II and beyond!
Dear UN – Thank you for making 3/21/2012 such a wonderful and memorable day! When the common person comes to your collective deeper understanding, then humanity has been elevated.
I found your article on the r word insensitive. From the first sentence you show you do not have a very close connection to someone who would be given such a hurtful title.
I knew nothing of Down syndrome until my daughter was born. What I quickly realized was that society had been labeling and excluding people with DS since the dawn of civilization. Had she been born even a generation ago, we would have been shamed into institutionalizing her like a criminal….as if she did something wrong.
In a generation these folks have been taken out of institutions, been allowed to attend schools, and then taken from the boiler room to their peer’s classrooms. Proper medical care has extended their lives from 25 to 60 since just the 1980’s….that is downright phenomenal (but also partially speaks to the neglect in times past).
While they have made much progress, I still live with fear knowing that women with DS are 150% more likely to be the victims of violent crimes and that over 80% will be sexually assaulted. Many people still see people like my daughter as subhuman and thus fair game as victims of horrendous crimes.
As humans we think in words, our words frame both our thoughts and how we perceive the world. As a writer, I am sure there are few who are as aware of this as you. When we use a term that is derogatory and dehumanizing to a group of people we let others know it is okay to treat them as such.
Our politicians have less impact on the economy than we would all like to admit. The recover from this balance sheet recession will lumber on for the next few years. But, that should not preclude my child from being given equal dignity. California is not the first to propose such a law. In fact the Federal government passed Rosas Law and many states have followed suit. There is no reason our government should continue to use a word that causes harm on those it describes.
I have to admit that I am a bit hesitant to jump in the snake pit that is the discussion around the Wrongful Birth lawsuit that just concluded with a $2.9M verdict in Oregon. The parents stated they would have aborted their now four year old had the prenatal test successfully detected that she has Down syndrome.
At the same time, I wanted to issue fair warning to my high school guidance counselor – your paycheck is mine. You see, I went to Mr. Sandowski to help decide on a career path. With my requisite skills in math and science helped send me down the path of engineering. After four painful years of engineering classes – years where I gave up nights at the bar for the library – I ended up at a job designing electric motors in a rundown rust belt town. After a half decade drudging through dead end towns I finally had to go back to school to come out the other end as a “recovering-engineer”. I gave up a decade of my youth working too hard in things that did not enliven my passions, and I was nowhere near those fast-growth internet companies that made millionaires out of kids. And now I am way too tied down and burdened with a family and life to regain all of those opportunities.
So Mr. Sandowski, I am sure you steered many people right. And I am sure you did not miss on me simply because you had a late night the day before. But none the less, your advice took one decade of my life and permanently changed its course. Sure I met the love of my life in one of those dead end towns, but had I known how unstimulating those towns were, how unfun those jobs were, I could have simply thrown the wife and the life I have made away …and started over with some other life and an equally wonderful wife and kids (but obviously a better career path). If only it were as simple as changing my clothes, to change my life and all of the consequences of my choices (good and bad) – then I wouldn’t have to sue you. But, life is not that easy. And so you must learn the lesson that you are responsible for your actions and choices.
Mr. Sandowski, please do not try to defend yourself. Do not drag out these proceedings. This is not just a financial rectification, but it is also you taking ownership. You need to take ownership for your shortcoming – and pay me for the rest of your life – after all, how else can we move forward and make the best of what is to come?
Oh, and dear wife and kids – I really do love you. Nothing personal, I just need what’s coming to me…..I am sure it is going to be great.
I wanted to send you a quick note asking you to take some time covering the first UN sanctioned World Down syndrome day on March 21st, 2012. There is a civil rights movement going on for people with Down syndrome (and other disabilities) that is an amazing once-in-a-lifetime occurance. It is unfolding before our very eyes, and with the United Nations jumping on board it is a perfect excuse to showcase how far people with DS have come, what exceptional things people with DS are accomplishing, and the bright future just around the corner.
When my daughter was born with a surprise diagnosis of Down syndrome I was in a state of shock like a drunken stupor. Quickly thereafter, the nurse started piling on all of the medical problems she would be prone to having and all the things she could never have or do (never drive a car or get a job, never have private health insurance, never own a house, never get married or have children). These were insurmountable challenges for a first-time father. (When the nurse started to tell me she would be forced on to Medicaid because insurances could discriminate against her and thus she would be forced into poverty to qualify for Medicaid I was in disbelief – this was not the America I was born and raised in. And from that very conversation forward, I committed myself to seeing Brianna’s civil rights restored to the status of an ordinary American.
In the last generation there have been mazing transformations in the quality of life for people with DS. In the 1980’s their expected lifespan was 25 years, today it is about 65 years (amazing). Just thirty years ago they were locked in institutions like criminals and today they often are in classrooms and jobs alongside typical peers. People with DS hold jobs, are actors (Lauren Potter comes to mind), get Married (Monica and David is a documentary movie on the topic), drive cars, and even go to college and own businesses.
At the same time they still are not given the chance to fully participate in society. They are often under-employed or unemployed, not given all the services in schools they need to be successful and productive, and housing options can be limited. More so, they suffer from outdated stereotypes that create self-reinforcing barriers.
Contrary to common understanding, most of us parents with a child with DS find them to be an amazing blessing on our lives. Our other children are more well-rounded and empathetic to others. We are less likely to get a divorce. Our children add tremendous value to our lives, and we know that once society at large begins to see people with DS with the same perspective as us, many of these barriers will shrink or disappear. And we will all be better off.
It would be amazing if our local media could help us get the story out about people with DS’s positive impacts and amazing contributions. It could be on the day of March 21st or a short human interest story each day of the week. We have amazing actors (Lauren Potter) and professional sports players (Albert Pujos) and advocates, regular people doing amazing things. How many times in your life will there be a people improving their acceptance and quality of life so rapidly? By changing people’s perceptions even a little, we can help accelerate a greater equality for and improve the quality of life for many deserving Americans.