Susan Senator

My children have all crossed the threshold into adulthood. My youngest son Ben is settling deeply into a happy life as an art student in Savannah. He is happier than I have ever seen him, living according to his goals and talents. His art is a wild and wonderful combination of wisdom and wit way beyond his twenty years. My middle son Max is a First Assistant Cameraman living in Brooklyn. He has a beautiful life rich in friends, interesting gigs like feature films and fashion shoots, and the freedom to explore his fullest potential.

My oldest son Nat has, at long last, arrived at his most exquisite opportunity: Full Inclusion in society. Being able to work, play, rest, grow. As a man with autism, this takes a special combintion of drive, patience, and support. Nat has the first two. The support he needs comes from his family and his community. And our government. This support enables his participation in a full life.

You cannot have a full life unless you are included among others in the world. You cannot be included if you do not have the tools to allow you to function among others.

People with disabilities need tools to manage in society. Ramps, canes, service dogs, talking crosswalk signals are some. Other tools are support staff to help someone who has social and sensory, and maybe intellectual impairments navigate complicated systems, be they social, geographical, financial, or otherwise.

These supports are not cheap. But they are necessary or you have huge populations who cannot live safely, work, or learn effectively. They wind up on the street, in expensive dead-end institutions, or in prison. Or sitting in their parents’ homes staring at a television set until their parents are too old to take care of them. Then, it’s onto some state-funded group home, if they’re lucky.

A compassionate and supportive society and government are not new concepts. Jean Jacques Rousseau coined the term “The Social Contract” in the mid-eighteenth century. According to the Stanford Encyclopedia of Philosophy, “The concern that dominates Rousseau’s work is to find a way of preserving human freedom in a world where human beings are increasingly dependent on one another for the satisfaction of their needs.”

Our country was founded on this Enlightenment philosophy among others. Our government grew out of finding a balance between a government large enough to protect vulnerable individuals, and a government small enough to protect individualism. John Adams, Thomas Jefferson, Benjamin Franklin — all of them were steeped in it.

Even though our government began with these beautiful, powerful, humane ideals, we have always needed to work to maintain them. We need accurate information, we need to vote, we need to push back on those who would take these away.

The Current Political Climate Threatens Inclusion

People with disabilities and their loved ones need to work even harder to access the fullness of life. That is a difficult reality, but it is a fact. For example, if you find there are endless waiting lists for your adult developmentally disabled loved one, you must press for change at the state level. Or, for example, access to healthcare, regardless of pre-existing conditions, is necessary for the health of people with mental, physical, intellectual, social, sensory, or behavioral challenges. A least restrictive environment during ones school years, one that is free and appropriately supported, is another tool people with disabilities need.

But to have these supports, you must make the effort with your lawmakers, even though it is hard. Find out if your senators and representatives support Medicaid and advocate if they don’t. Make appointments to visit their offices in your state house. If you can’t do that, write a letter, send an email, make a phone call. Get your fellow families to do the same. If you throw up your hands and let people tell you that there’s not enough money for this, for healthcare, for public special education, for job coaches, for well-trained housing staff, you must point out to them that we have a gigantic deficit not because of our public support programs and entitlements but because the current President and Republican-controlled Congress voted last fall for tax cuts for the wealthiest corporations in the country. Not tax cuts for the middle class or the working poor. According to the Newsweek article linked to above, “a new analysis of all Fortune 500 companies found only 4.3 percent of workers will receive a one-time bonus or wage increase tied to the business tax cuts, while businesses received nine times more in cuts than what they passed on to their workers,” Think about that for a moment, and then decide if this is fair. You might get a wage increase, a bonus, or a tax rebate this coming year. But what do the wealthiest get? Nine times more.

If politicians or fellow citizens tell you, “we have to tighten our belts, and slim down our government agencies,” they are overlooking the fact that the wealthiest, the corporations, and indeed many of these politicians themselves, have done no such thing. No, they have received huge increases in their income. They have bloated the military budget beyond good sense. That’s where the money has gone. Not to food stamps or healthcare for the poor and disabled.

Do not let anyone make you feel guilty for advocating for supports for your developmentally disabled loved one. Don’t let your town governments blame special education for being so expensive; ask what they spend on sports and all the other academic and extracurricular programs that special needs students often do not participate in. My own town used to do this, and it was common statewide to blame the out-of-district placements like my son Nat’s, when the reality was, my school system refused to create an appropriately structured classroom for Nat. If they’d hired just one specially trained autism teacher for $50,000 and set aside a small room for perhaps a class of only 4 or 5 as challenging as Nat, they would still have spent 25% of what they would spend if each of those students were placed in private autism schools like Nat’s.

While I’m glad that my school system did send Nat to a great private autism school, I lament the fact that he was not included in his town until he joined Special Olympics, until our town strengthened their Parks and Rec program to offer special programs for guys like Nat that were — once again, con brio — funded with public money. Now he has friends but during the school years he had very few. One guy at age 15, another one at 17. Now, dozens. (You will see why further down, below.)

It is public program supports that allow guys like Nat to live as fully and independently as possible — not on the street, not in a psychiatric facility, not in prison. He can put to use his publicly funded very comprehensive education. He can now work, buy things, and generally participate in the economic health of our economy.  He can play sports and compete statewide, he can be the frontman in his rock band. He can volunteer for Meals on Wheels during his week.

But we need the funding and the advocacy to make it happen. And there is no other answer, other than the simple but difficult one: we need to believe in public programs, we need never to stagnate, we need to make sure that in taking care of our more vulnerable citizens, we are open-minded and creative.

What’s more, we need to demand that our country pays its fair share towards this end. It’s the new Social Contract, where society provides the tools for people with disabilities to live out in the light. It’s not a handout. It’s a hand upward, a lifting-towards life. A full life, liberty, and the pursuit of happiness.