Let me tell you a story. While you read, I want you to be repeating this in your mind: Medicaid is inclusion. Medicaid is inclusion. Medicaid is inclusion.
The last century has been increasingly positive for people with disabilities. in 1949, the average life expectancy for a person born with Down syndrome was 12. Today, it is 60. People with Down syndrome were systematically excluded from society, with very discernible consequences. Stigmatized, lacking appropriate medical care, shut out of schools, denied meaningful work, warehoused in dangerous and often abusive institutions tangibly damages one’s chances for a long, meaningful life.
How does society attempt to rectify the stigma and prejudice that people with disabilities face? We use our collective resources to give disabled people a fair shot at living an inclusive, meaningful life. Healthcare. Education. Employment. Living at home. This is not only a financial imperative (people in institutions and experiencing health crises are expensive) but also a moral imperative (we value each other as equally worthy of participating in society).
Again: Medicaid is inclusion.
American Law and the History of Two
Judith Scott was born in 1943. She had Down syndrome, her twin sister did not. At the seven years old, deaf but never diagnosed, she was sent to live in an institution. She was thought to be “uneducable.”
“Millions of our citizens do not now have a full measure of opportunity to achieve and enjoy good health. Millions do not now have protection or security against the economic effects of sickness. The time has arrived for action to help them attain that opportunity and that protection.”
Over twenty years later, Congress passed the Social Security Amendments of 1965 by large majorities, establishing Medicaid for vulnerable populations. When he signed it, Lyndon Johnson credited Truman for being the original force behind the bill.
Judith Scott was 22 years old when Medicaid became law, 15 years into her time in an institution.
The same year, Congress passed the Elementary and Secondary Education Act of 1965 (ESEA), ensuring funding for schools to provide all children with a quality education. Since then, the Education for All Handicapped Children Act (EHA) and the Individuals with Disabilities Education Act (IDEA) mandate that disabled children must receive a free and appropriate education.
Judith Scott was 43 years old when her twin sister became her guardian and brought her home. It was 1986. I was five years old, and living in the Bay Area, where the Scotts also lived.
The Americans with Disabilities Act (ADA) passed in 1990 and signed into law by George H. W. Bush. Nine years later, the United States Supreme Court ruled in Olmstead v L.C. that states were required to support individuals with disabilities in their communities rather than in institutions.
Judith Scott lived with her sister for almost twenty years before she passed away in 2005. We lived in the town over from her. Seven years later, I gave birth to a baby with Down syndrome.
The Past Lights Our Future Path
I know about Judith Scott because after was released from government care, she went on to be a world-renowned artist. You can read about her work here.
The story of the Scott sisters made me weep, hope, and mourn. I wept for Judith, knowing that had my son been born then, he might have suffered a similar fate. I hoped that the world might one day appreciate the fruits of my son’s labors—whatever they may be—in the same way that Judith Scott’s art was appreciated. I mourned for what might have been, if only society had seen her intrinsic worthiness and included her from birth.
In 2012, the world seemed entirely different than it had been in 1943. When my son was born, I truly thought that inclusion was an attainable goal for him because of the legal protections and social safety net he had been born into.
To be clear, I want is true, lifelong inclusion. In Truman’s words, I want him to have the “full measure of opportunity” that every non-disabled child has. Full stop. That means that through appropriate supports, he would have not just a shot, but an equivalent shot to what everyone else has. (And don’t for a second think that because you are not disabled, you don’t use supports. Your supports are simply seen as de rigeur for “normal” life.)
The benefits of true classroom inclusion generalize outside the classroom as well. Medicaid, with all its flaws, is what helps gives people with disabilities that equivalent shot at an inclusive life. Medicaid dollars translate to Early Intervention, special education funding, basic and specialized medical care, home based services (to avoid institutionalization), respite hours, job training, mobility aids, communication devices, therapy. Medicaid is that extra crate to stand on in order see the game of life.
One more time: Medicaid is inclusion.
When Judith Scott was born, there was no Medicaid, no ADA, no IDEA. What life would she have lived, if she had been born 69 years later, when my son was? I think she could have had Early Intervention services and learned ASL. I think she could have gone to school with her twin sister. Stayed with her own family. Lived happier. Lived longer.
Judith Scott should have had more. Today’s Americans with disabilities should have more.
In case it needs explaining: if it hasn’t already, disability will likely touch you. It probably already has and you may not know. Valuing disabled lives, values all of us. By dismantling Medicaid, we are harming our bodies, our collective financial health, and our moral compass.
This story isn’t over. I wish that I could write it by myself, but I cannot. We humans are blessed and cursed with our capacity for collective action. 56.7 million Americans (nearly 1 in 5) are disabled. Medicaid covers 10 million elderly and disabled Americans, 33 million children, half of all births. The nonpartisan Congressional Budget Office estimates that in the next ten years, 22 million more people will lose insurance. After ten years, the numbers will grow even more.
There are 100 senators. There are millions of us. We can right this ship, if we act now.
“Doing Damns the Darkness”
(I learned that phrase from Dave Hingsburger, who spends his life and career advocating for people with disabilities.)
Center on Budget and Policy Priorities on why Medicaid actually works.
What are others saying?
Need I say more?! Get to work, friends. The links above also contain calls to action that you can follow.
Look. Contrary to how we seem to be acting, we are not actually in the zombie apocalypse. Or, any kind of apocalypse at all. If you doubt my claims, I suggest you look out of your window. Go on, peep. Are there undead corpses roaming around? Are there locusts and frogs raining down from the heavens? The sky is up high and the ground is down low, right? Oceans where you left them? Phew! What a relief.
I am so sick and tired of people justifying exclusion and discrimination by making it seem like we are in the end of days. I mean, okay, for most of human history, the struggle to survive has been real. Back in the day, we were romping about the earth in furs and spears, sure, life was more tenuous. But. That was a verrrrry long time ago.
In the last, say, two hundred years, humans have been ridiculously busy. Anesthesia, dishwashers, photography, air travel, mechanized farming, the internet, nuclear power, toilet paper, vaccines, instant coffee, machine guns, antibiotics, contraceptive pills… These are all from the last blink of an eye in the timeline of human history. Some good, some bad, some TBD.
With all that modern invention, we have gotten to the point that we collectively make 2,720 kilocalories of food for every person on this space rock of ours. Yes, I believe it is true. Yet somehow, huge numbers of us are starving and in poverty, because we can’t stop fighting and trashing the planet long enough to take care of our fellow human beings. We are our own worst enemies.
In this country, especially, I cannot believe that we are arguing about lacking resources to address poverty, lack of access, and inequality. We throw out more food than paper, plastic, metal or glass combined in this country, and we have the largest material requirements in the world (to support our apparently dire need of huge houses, extra cars, bottled water, etc.). I mean, we are a nation that is willing to pay upwards of $10,000 for Super Bowl tickets, for crying out loud.
What about the “if everyone did that” argument? If everyone were in a wheelchair? What if everyone had Down syndrome? If everyone were this, that and the other? I concede that yes, if every single person on the face of the planet suddenly lost use of his or her legs, sure, perhaps we would be in a pickle. If tomorrow, every single baby were born with a disability, yes, it would give me legitimate reason to pause.
These imaginary scenarios, however, are never going to happen. This obsession we have about what the ideal human should or shouldn’t be has got to stop. We are not all the same. That is the genius of the human condition. We are a diverse species, and that makes us strong. Maybe it is wired deep in our brains to worry about this stuff because back in the day, it was an actual possibility that 3 out of the 5 good hunters in the clan broke a limb or succumbed to a disability causing illness, and then the baby born that year had some significant condition. I get it, that would put the group in a real bind. But look, the interwebs tells me that the UN estimates there are somewhere around 7 billion people in this world. Between us all, we can stand to have a little variance. And, we make enough food to feed every single one of us. So is our situation actually so dire that people need to rant and rave in the comment section of every article about disability that “they” are sucking all of our resources? It isn’t about lacking resources, we need better systems to make the world more equitable (and this issue is not limited to disability, of course).
Which brings me to my original point: the zombie apocalypse. Given that we have left the period of human history in which we are living in truly tenuous times, I’ve tried to look into the future. Would there ever be a time in which this irrational obsession with (actually not so limited) resources would become somewhat rational? The only scenario I’ve managed to come up with is the zombie apocalypse. Even then, I’m more of a “live together, die together” type of gal, myself. But go look out the window again. No zombies. I’m even gonna go out on a limb and guess that there are no zombies in our immediate or even long-term future. We are more in danger of irreparably trashing the Earth in the next few decades, in which case the zombies won’t even have a planet to overrun, so no worries.
I’m an optimist. We can absolutely take care of each other, and in so doing, we will all benefit. We can have a more inclusive society; the resources exist, the talent exists, some people are working very hard at it. If we put more energy into supporting those efforts, I think we’d all be a lot happier. Plus, in the off-chance the zombie apocalypse does happen, I think learning how to more successfully cooperate will mean we’ll have a better chance at surviving anyways, am I right?
If you have recently followed the blog, you might not know about Ethan Saylor. He was a man with Down syndrome who went to the movies with a caregiver, had a misunderstanding over wanting to stay in the theater without a second ticket, and ended up dead. He died of asphyxiation; his throat was crushed when three off-duty police men tried to inappropriately remove Saylor from the theater instead of allowing the caregiver to diffuse the situation.
During that time, many people in and out of the disability community were calling for more police training, believing that such training would have altered the course of events for Saylor. I felt deeply ambivalent about the discussions on police training after the Ethan Saylor’s homicide. In fact, I saw some very real examples of how the concept of training turn into something very wrong.
Last week, many in the Down syndrome community became aware of a children’s gym called Surgent’s Elite School of Gymnastics in New Jersey that refused to allow a little boy with Down syndrome to have his fourth birthday party at their facility. When the boy’s mother went to arrange her son’s birthday, she discovered that the gym had a blanket “no special needs” policy.
The New Jersey play gym defended their “no special needs” policy because they claimed they did not have enough training.
Cases like the little boy in New Jersey are downwind casualties of the very flawed logic of training that I saw after Saylor’s death. I won’t go into the myriad reasons that I didn’t think discussing training was appropriate in the immediate aftermath of Saylor’s death, but will say generally that I think it siphoned off valuable energy that should have focused on accountability and discipline. Above all, I worried that the myopic focus on training would bolster the false logic that one needs special training or expertise to interact with a person with a disability.
I think that supporting disability training in all situations, for all reasons, is very dangerous. It subtly creates a believable barrier to understanding and inclusion. If a four-year-old boy can’t even have a birthday party without some kind of specialized staff present, then how could that boy be included in a typical classroom? Play sports? Be in public? Many can easily make this troubling leap in logic.
It is clear that the manager of the gym is not out to be a terrible person. He’s since offered to host the party, which is a step in the right direction. Yet I can’t get behind his insistence on hiring specialized staff to do it. I cannot, for the life of me, imagine what kind of specialized staff would be needed for this situation. I’m sure many are thinking, oh, but maybe the boy wasn’t physically able to do what his similarly aged peers could do. The mother reported that her son had no medical restrictions. I’d hazard a guess that the boy liked and could do the kinds of activities that a birthday party at a gym would entail, or else his mother would not be pursuing the idea at all. I’ve been to plenty of kid’s gyms. Children inevitably have different ability levels, that is simply natural variation, special needs or not. Any decent staff knows how to adjust the activities so that all the children present are comfortable. Don’t mistake me, I can imagine various, specific circumstances in which a child would need some extra support in order to participate in a birthday party at a play gym. But frankly, I can imagine these situations in and out of the special needs realm.
The message, in the meantime, seems clear. Children with special needs cannot be included simply as a matter of course. In fact, it may be safer to exclude them altogether. As an aside, this safety logic was also very prevalent in the aftermath of Saylor’s death; many blamed Saylor’s mother for placing him in the supposedly dangerous situation of being out in public without her presence.
Is it such a big surprise, when some in our own disability community accept that police brutality against their own can be solely addressed with… training? This over-reliance on training sets disability apart in a way that I do not see in any other marginalized community. Imagine the words, “If only he had been trained to deal with black people,” were uttered after a race-related officer shooting. Yet, replace “black people” with “disabled people” and this sort of logic occurs every day in our schools, police departments, government, and every day conversations without enough critical examination.
It isn’t that I don’t think awareness training can be valuable. Sensitivity training for all sorts of groups, for instance, is a good thing. I don’t feel differently about disability training. Mainstream America could stand to learn what disability actually is and isn’t, and that it is a varied and diverse part of human existence. It is an unfortunate fact that many people simply are not exposed to positive and realistic depictions of disability and if training can help bridge that gap, wonderful.
Let’s just be careful. Training can only be a small part of that solution. It is hard to talk about inclusion for the sake of inclusion, accountability and discrimination because they force us to confront basic ideas of good and bad, right and wrong. These conversations are confusing sometimes and can get uncomfortable, but ounce for ounce, the amount of positive potential is much greater there than in simply slapping a training/expertise label onto the problem and walking away.
If I could get in a room with the officers who killed Saylor, I would ask them why they felt that Saylor was so different that the de-escalation techniques they surely already knew were not applicable. I would tell them that if they had dug into the basic training they already had, that Saylor could still be alive today. I’d tell them to approach every person, disability or not, as a unique and precious life.
If I could get in a room with the manager of Surgent’s Elite School of Gymnastics, I would tell him to reconsider his belief that he needs special training to run an inclusive gym. I’d tell him dig into his basic instincts for interacting with children, rather than adopting a blanket policy of exclusion out of fear. I’d tell him to approach every child, special needs or not, as a unique and precious life deserving of inclusion.