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.
50 years ago, New York Times writer William Petersen wrote an article titled “Success Story: Japanese Style” and in it, coined the term “model minority.” Today most of us know what this term means, but in case you don’t, here is a fairly good history of the term and its social and political impact for the last half century.
What I don’t think many people pause to consider is that the model minority myth did not flourish because it was true, or that Asian Americans fully embraced it, but rather because it was beneficial to the racist status quo. Who was writing about the model minority? In 1966, not Asian folks.
More importantly, for whom are we modelling?
I think there are valuable lessons here when we consider how disability fits into the mainstream narrative. What does it mean to “overcome” one’s disability? Or to proclaim that we are only disabled in attitude? Or to applaud examples of average daily tasks as inspirational or against all odds?
50 years since its birth, the model minority myth is not exclusive to the AAPI community. This kind of narrowly elevated yet not equal status is a tool used against the disability community as well. In the Down syndrome parenting world, this manifests as pressure for us to “catch more flies with honey” (i.e. Don’t sound too angry or the discrimination your child faces is your fault) or to be thankful that our children are labeled with positive rather than negative stereotypes.
It is true that yelling and screaming at an IEP meeting will likely not get ideal results. Yet, is the frustration invalid? Why does a parent “breaking nice” relegate a child to fewer educational rights? A bigger question: What does it mean to have IEP proceedings (and its required assessments) for only some children and not all? It is also true that cursing the person at the grocery store who used the r-word is unlikely to make them engage in a meaningful discussion of word choice and ableism. Yet, again, is the frustration invalid? A bigger question: Whose responsibility is it to maintain kind and just behavior?
Regarding positive stereotypes,yes, I suppose I would rather my son be approached with a smile under the mistaken belief that he is “always happy” than he be actively shunned. Sadly, it doesn’t work like that. Because by definition, a stereotype is not something any human being can fulfill, all positive stereotypes lead to failure.
In failure, we see the racism or the ableism for what it is, because the penalties for failure are steeper for the model minority than for his other peers. Growing up I learned to be very wary of men who were romantically interested in me for being Korean. On more than one occasion I have feared for my safety after disappointing a man by not being a submissive “good girl.” Ethan Saylor suffered the fatal consequence of not living up to this model minority phenomenon; three years ago, Saylor died at the hands of the police after failing to be docile or sweet after a miscommunication in a movie theater.
These two examples seem wholly unrelated, but I believe the commonality is powerful. Both are examples of how physically and emotionally dangerous it can be for the majority to dictate the attitudes and behavior of a disenfranchised minority, however “positive” those expectations can seem.
As we strive for a more inclusive society, I think there are valuable lessons in the model minority myth for parents in the disability community. Whose standards are we raising our children to fulfill? What is good for us, the parents, and what is good for our children? What do we do when our interests as parents seem to conflict with our children’s? How could our narrative today impact our children tomorrow?
Let’s have the conversation.
Hey, before I start: I got an early copy of this book to review, ‘kay? Okay.
I think that most parents who have a child with Down syndrome remember cracking that first informational book or pamphlet. I also think that the parents who recall that moment with any fondness are in a minority.
When I started really believing that LP had Down syndrome (but before we got any test results back), I went to the library and borrowed every book I could find with the words “Down syndrome” in the description. I’ll confess to you: I flipped through those books and never finished a single one.
I was like the Goldilocks of T21 books. Too sad. Too technical. Too saccharine sweet. This one freaks me out. This one is just offensive. Nothing was quite right, and I gave up.
So I went online, met a bunch of other mamas, totally ignored my husband for a few months, forged some lifelong bonds, and moved on.
I still wonder what would have happened to me if I’d never found those connections, and had stopped at that terrifically unsatisfying pile of books. Would I have had a harder time bonding with my baby? Would I have the support network that I have today? What would my overall view of disability been?
And the fact is, all across the country, parents are being passed those not-quite-right resources every day. Genetic counselors, pediatricians, OBGYNs, even well-meaning family members are purchasing and distributing books on Down syndrome. Yet, I have never read a comprehensive book that was actually written for parents, by parents, that I liked, until The Parent’s Guide to Down Syndrome. It covers the medical nitty gritty without being overwhelming and holds your hand through the emotional parts, as well as covers a wide age range. This book could very well be the only book that a parent could purchase; it is full of resources and can be treated as an index to keep returning to as your child grows.
It makes very little sense, actually. What is a doctor going to be able to tell you when you are in that raw, tender moment that could possibly equal the words from someone who has gone through the same moment with their own child? Of course there are good doctors, don’t get me wrong, but what makes the strongest, truest connection is usually someone who has had the same lived experience as you. And yet often I found that the parent books were hard to relate to because they held views that didn’t speak to me.
Much of the book reads like a coffee date with a hundred or so other parents (another disclosure, I’m one of those parents). In there, you’re going to find a voice that resonates. And I found myself recognizing parts of my own metamorphosis; I saw my initial holy-wow-can-this-be-true self, that changed to the my-kid-is-the-best-ever-forever-and-ever self, that changed to the oh-crap-I-guess-I-should-plan-a-little self, and on and on. I imagine that someone could read through all of the accounts and truly see the overarching path that many parents take, and notice that we mostly end at the same place—love and acceptance—without falling into the single experience of just one person.
Between the real experiences, you’ll find a ton of resources that span infancy through adulthood. That’s where the professionals come in, and hey, they might be our frienemies but we like to hear what they have to say every now and then, right? The topics and chapters are laid out very well, so a reader can go in and get information on specifics if they wish. I certainly wasn’t very interested in trust planning when my baby was four months old, for example.
Most importantly, the book does not sacrifice values at the altar of neutrality. Sometimes I think in an effort to be neutral, our parent community has an “everything is equal and valid” kind of presentation, and that can be dangerous. Instead of doing that, this book takes pains at crucial points to steer the tone and meaning away from possible stigmatizing language and ideas. The book recognizes that we are all human with the same basic needs and desires while also acknowledging that people with Down syndrome may have certain needs due to their particular disability.
It isn’t going to give you step-by-step instructions on your kid. It won’t tell you what to do, because the authors know that there is no singular path for any child, let alone a child with Down syndrome. But it will give you a decent atlas, if you will. Like, What To Expect When You’re Expecting sort of book geared towards topics specific to Down syndrome.
And now I come to my favorite part: the voices of people with Down syndrome! I was so pleased that the later chapters that cover adult topics actually had… Yes! Adults with Down syndrome sharing their lives!
I can’t overstate this: I will never know what it is like to have Down syndrome. At some point in my son’s life, he’s going to have to find his second family, among other people with intellectual disabilities. This book starts that conversation for new parents so they can read the words of other adults and have a glimpse into their children’s (wonderful) futures.
If you’re a parent in the community, I’d highly recommend buying a copy of this book at sending it to your OBGYN or pediatrician, as well as your local Down syndrome organization. Or, better yet, hop on over hereand enter in a really fun giveaway. The prize includes an “I love someone with Down syndrome” tote, fun stickers, a registration to this year’s 321eConference, other book resources, and of course, a copy of The Parent’s Guide to Down Syndrome.
You can read more about the book here, including where to purchase and book tour details.