Following my recent blog post, “The Language of Disability,” I received an invitation from a local high school teacher to speak to her class of future educators. I was thrilled, because this kind of opportunity aligns beautifully with my vision for Gray Colored Glasses. I used the original post as a jumping off point and further developed the metaphor of how to “speak the language” of disability, both to support families and to communicate and connect with kids like Isaac.

There are many different kinds of disabilities. Down syndrome, cerebral palsy, muscular disorders, hearing & vision loss, to name a few. Some are more apparent, like physical disabilities and those that have recognizable characteristics. But others, like autism spectrum disorders (ASD) or intellectual & developmental disabilities (IDD), can be less apparent or even invisible. Younger generations are more aware of that than ours was (and those before us), but there is still work to be done.

Supporting families

There was a funny commercial a few years ago, where new parents open up a box to find their baby and then keep looking through the box, finally saying, “Where are the instructions?” Having a baby is a new and challenging experience for ALL parents, and while it’s true that they don’t come with instructions, there are growth charts, milestones, norms and expectations for different ages and stages of development for neurotypical kids. (There may be similar resources for kids with more common disorders.) But for families of kids who have rare or little-known disorders, like Isaac, it is truly daunting to realize you are going to have to figure things out on your own.  

Extended family, friends, and educators will be better equipped to support families of kids with disabilities with these few things in mind:

1. Parents of kids with disabilities, in particular, were not given a manual on how to help their children. They need your partnership and compassion. 

2. Most parents understand their kids better than anyone else. For everything you have learned and observed about their child, they have their own observations and experiences to share. And they likely know and see things that nobody else does. They need you to listen.

3. Parents have a story about what their life was like before, how they found out, how they’ve rallied around this unexpected turn of events. Keep in mind that there could be many layers of concern, grief, and even trauma behind what is happening with their child at a given time.

Valuing the community

When it comes to kids with disabilities, I was in a very different place when I was in high school than I think (and hope) many kids are now. And it wasn’t so much that I thought mean things about people with disabilities. It’s more that I didn’t think about them at all.

There has been a cultural shift over the last 30 to 50 years, maybe longer, from a time when we hid away children who were different from the norm. We educated them separately, or at worst, put them in institutions, where they would stay the whole of their life. As a society, I think we’ve grown to understand that people who are different have some very important things to contribute and to teach us.

They have personalities, ideas, and desires. And even if they process things differently or more slowly or act in ways that we find off-putting or don’t understand, their feelings are every bit as real and intense as ours. And for us to truly value this population of people—whether as classmates and peers in school or as educators who are working with this community and their families—we need to learn not only the trends in terminology, which are important, but also how to interact in ways that are truly inclusive and adaptive. We need to be the ones who make the effort.

Speaking the language

Kids with disabilities want to have friendships and relationships. Talk to them as you would talk to any other person, but know that they may respond in unexpected ways. Kids with intellectual and developmental disabilities may have difficulty with expressive or receptive language, or both. Which means they may struggle with the ability to produce speech or to understand it. It may take them longer to process what you’re saying to them. Give them extra time to respond. Or maybe restate what you’ve said or asked in a simpler way, using fewer words. Slow the interaction down.

“For us to truly value this population of people … we need to learn not only the trends in terminology, which are important, but also how to interact in ways that are truly inclusive and adaptive. We need to be the ones who make the effort.”

Ann Bell Worley

If you don’t understand what they’re saying, put the responsibility on yourself. “I’m sorry, I’m having trouble understanding.” If it continues, find other ways to connect beyond language, through eye contact, reassurance, or nonverbal gestures (like a smile).

Some kids, like my Isaac, go very quickly to fight or flight, and that impacts their behavior. We don’t always know what’s happening in a child’s brain. But when a child’s behavior is erratic, they are in crisis. Their family is in crisis. They need compassion and understanding, not judgment and exasperation. If you see that they’re uncomfortable, you can acknowledge that. “It looks like you’re upset. That’s okay. Let’s take a minute.” Or “I’m sorry you’re struggling. I’d like to help.” Pay attention to what you see, and make adjustments. Be sensitive.

Making the effort

You have likely already picked up on this, but making the effort to engage in these types of interactions doesn’t only benefit the person with the disability. It makes us step up into the best of who we are as human beings. Imagine a world where people bring this level of sensitivity and awareness to all of our conversations and relationships. Learning to interact with the disability community can stretch us to become better people.

It has been a true education for me as a parent, to learn and understand how my child operates and how I can best advocate for him. And that is an ongoing education for me, just as I hope it is for our society as a whole. Having a child with disabilities has impacted my day-to-day life, my career, my faith, my marriage, my neurotypical daughter, my relationships with extended family, and my relationships in the community. My husband and I always say, you can learn a lot about a person by the way they treat our son.

“The language of disability” is about our entire disposition and orientation toward this community of people. There is no “one size fits all” way to treat persons with disabilities, because they are not all the same. 

But if you value these kids and their families, listen to their stories, and remain open to learning … and as an educator, if you share your observations and concerns with humility and with genuine interest in their growth and development … you will not only become fluent in the language, you will become a better person in the process. And nothing will challenge you more or make your life richer than opening yourself up to this important community.