Yesterday, I cried at Kroger. In the produce department, while picking apricots, I started crying. I’m pretty much a wear-my-heart-on-my-sleeve kinda girl. There are songs that cue instant waterworks when they come on the radio and Hallmark cards that will get me every time. I feel emotions intensely. All of them, from anger to despair, from joy to excitement–they all make me feel like I’m going to burst, but in different ways. Some call this being dramatic. I call it being emotionally intuitive. 🙂
Anyway, as I was shopping for produce, procuring strawberries, bananas, apples, and of course, apricots, I noticed a man pushing a shopping cart not far from me. My eyes lit up and I smiled. At first, he appeared to be a young man, but upon closer inspection, his graying hair and the lines around his eyes gave away his age. I smiled even bigger at the realization that this gentleman was out and about in his community despite his age, and I hoped he would look my way so I could strike up a random conversation with him, as shoppers in grocery stores are sometimes apt to do. But he didn’t look at me. He just gazed straight ahead at the woman he was with. And he pushed his cart behind her silently as she pushed her cart through the store.
That was when I first felt my throat tighten, when my eyes welled with tears and I nearly choked on my own breath to keep from crying. This woman–she was supposed to be guiding him through the store, helping him. And she was ignoring him instead. She didn’t bother to engage him in the shopping. She didn’t bother to even crack a smile. She just led this man around stoically, and in the moment, a painful thought rose from my gut and I screamed on the inside, “That will never be my son!” I put my hand to my chest as I caught my breath, and the tears began to fall as I placed my apricots into the bag. And I didn’t care who saw me. My mind raced ahead 50 years and I vowed that no one will ignore my son that way. No one will strip him of his dignity, especially in a public place, where such behavior by a caregiver shows the rest of the community that it’s ok to ignore a person with a disability, a person with Down syndrome. But it’s not ok. It’s just not.
In case, as you’re reading this, you’re thinking maybe I’m being a little too hard on this woman or that I’m just being dramatic, let me explain. I teach young adults with developmental disabilities, including Down syndrome. In fact, I teach a transition-based program that helps students to get ready for life after high school. We work on functional skills–employability, self-care, money management. And we go grocery shopping on a regular basis. I know how this should look between a caregiver and client. And this looked nothing like that. Some might also say this man likely had no idea he was being ignored, that he isn’t able to experience hurt feelings. Bullshit. Down syndrome doesn’t render people devoid of emotions. We’re talking about people, after all. I can assure you–I’ve seen the hurt feelings–and laughter too–from my students. Their emotions are no less human than mine, nor are they any less poignant. Anyway…
There are some people that don’t believe what I teach is valuable. They don’t believe that it’s even education. Those same people, and even some of those that DO see the value in it, are often misled about why these transition-based functional programs exist. It’s not because these students can’t do anything else. On the contrary, many of them have participated in the inclusion setting for years before coming to a program like mine. Likewise, each of them has unique talents that extend beyond what we do in the classroom. Rather, these programs exist–and are necessary–because current data shows the overwhelming majority of adults with developmental disabilities do not participate in their communities, do not work, and do not foster meaningful relationships even though they are capable. Ultimately, the purpose of my program is to improve the quality of life for my students. And when we frame it that way, isn’t that the point of all education, whether functional or academic? To improve quality of life by producing self-sufficient, contributing and participating members of society? It’s just that my students don’t need algebra for that. They need to learn how to be a good employee, how to shop for groceries and stick to a budget, how to advocate for their specific care needs. I will even go so far as to say those skills are infinitely more valuable for my students than algebra could ever be. The value of education is not depleted because my program values function over academics. In fact, this is called equity–giving each person what he or she needs. There are plenty of people that believe my program should “look” more academic. But they don’t necessarily have a special education background. And putting these young adults in a program that looks academic just makes some people feel better about how uncomfortable they are with disabilities in the first place.
Don’t get me wrong–there is absolutely a place for inclusion. When our kids are included with their “typical” peers, it benefits everyone. Our kids are motivated and they develop peer relationships. When kids without disabilities grow up with kids that have disabilities, they learn that the kids with disabilities are, well, kids. They grow up without feeling uncomfortable around people with disabilities, as many adults often do. Because it becomes part of the norm, it becomes normal. There is little room for ignorance or fear of the unknown–both of which lead many to look right through people with disabilities–when our children grow up side-by-side with children with disabilities.
But there is also a place for meeting our kids’ educational needs in the setting that makes the most sense for them. Whether it’s learning calculus or how to count money and make change doesn’t matter. What matters is equity. And equity doesn’t mean treating everyone the same way. And that is where inclusion has largely failed students like mine, students like my son, at least inclusion as I have experienced it as a teacher. But enough about that for now…
I am not in denial about my son’s diagnosis. I am well aware of the potential challenges he faces, of what we’ll face together. And when the day comes, I want him to be educated in the setting that is most appropriate for his needs, whatever those may be. But I will be damned if I will ever let him be looked through or ignored. He will not be put in a corner to be forgotten. He will not be lead haphazardly through a grocery store by an unengaged caregiver, expected to follow like a puppy. We have no idea what Eli’s abilities will be, but I remain optimistic. And as long as I’m alive, I will never give up on him. And my children will be brought up to know that all people are worthy no matter their abilities, diagnoses, or disabilities. My son will be brought up to know that he deserves the same respect and consideration that anyone else does. And although I can’t control how my daughter feels about her brother, I hope that the way in which we bring her up teaches her the same thing, and should she ever have to be her brother’s caregiver, I hope that she does it without resentment and with a joyful heart.
I couldn’t wait to get out of that grocery store to get home to my kids. I just wanted to hold my son and smother him with kisses so that he always knows how loved he is. And I wanted to do the same to my daughter and tell her how proud I am of how much she loves her little brother. I am haunted now by that man’s face, by the look in his eyes. As humans, we are meant to lift each other up, not turn our backs on anyone, especially those among the most vulnerable in our society. I hope that someone loves that man as much as I love my son, that the next time he’s out, his caregiver acknowledges his existence and engages him in that day’s activity. And let me throw in a reminder for everyone: please look people in the eye–people in wheelchairs and people with Down syndrome, people with a lot of money and people without money. Show that simple act of respect to all those you pass, and you might consider smiling and saying hello too. Dismiss no one, because we were ALL created in God’s image.