While it’s been over half a year without a significant update, this post is a result of onboarding at my new company way back last year and getting to know new coworkers. As with many posts, we’re going to go a little beyond just what the title implies…
This is somewhat of a recurring topic in my life and one I continue to be surprised by. The surprise is in the unique ways people approach me to ask about my hands and arms. It is a wide spectrum! One one side there are people who act completely naturally, as if they didn’t even notice my hands and arms (some actually don’t notice immediately, which still surprises me) and just treat me like a regular human being. On the other side of the spectrum are the gawkers who literally stumble over themselves when they notice. I’ve seen many reactions in between, often quite fun! There have been several instances where medical school students in a group, usually at a bar in the pre-pandemic days or even out shooting pool, would be watching me from across the room until one would come over to introduce himself and explain why he and his friends have been staring. I usually invite them all to come over and chat and ask whatever questions are on their mind! Then there’s the “first timer” experience of seeing someone with arms like mine that often comes from kids, and kids are all over their own spectrum of reactions as well. There’s also the people who are completely candid and direct and come right out and ask the protocol for shaking hands or even cut to the chase and ask what the deal is! I greatly prefer these people over awkward guessing on both sides when meeting someone new and deciding each other’s comfort level in shaking hands!
On my side of these varied introductions, I am very aware of the nuance and difference but never really thought about them in terms of “best practices” one might be able to use in polite society. As for the title of this post, that’s a question one of my coworkers asked me a couple months after I started the new role. I really hadn’t given that question too much thought until that moment, but it was a fantastic thought experiment even though the answer for how to talk to people about their disabilities isn’t quite that simple: It depends.
The context of my coworker asking that question is a fun part of the story. I had been in my role for a couple months when I decided to give my presentation on diversity and inclusion I created for middle schoolers to a dozen software developers at my new company. In my new role, as their manager, I am accountable for identifying topics for CE (Continuing Education) which is usually technical in nature. I was light on topics this particular week and I decided to give the presentation as a soft-skill CE, but also to thoroughly and transparently give them all a time and place to comfortably get some answers to questions that might be on their mind.
First off, I was very pleased with the transferability of the presentation from a middle school audience to a group of adult professionals. I was equally as impressed with the participation and inquisitive nature of the audience, this time being my colleagues. While some questions were similar (how I perform certain tasks and such) there was definitely a new perspective in these questions, as expected. The question that became the title of this post came from a young father with a newborn as well as a pre-school aged child. “I want my kids to be aware and respectful,” he said. A very noble goal! And while I gave a rather thorough response, it was definitely not fleshed out but rather a stream-of-consciousness collection of thoughts, experiences, and suggestions. While ultimately I don’t think I gave a clear response, I’ve been thinking on it every so often in the months since! 🙂
I struggled with the initial response not only because this isn’t exactly a simple question with a yes/no answer, but because I ultimately realized it’s not merely dependent on how the interaction is initiated. It’s highly dependent on all participants in the discussion and their unique personality styles, and potentially even their moods in the moment. In the months since that initial exchange, I think my own consideration of the topic finally found traction when I compared the question to any other physically identifiable aspect. I mean, we don’t exactly go around asking how to talk to people about their race / obesity / sexual orientation / appearance / etc. (Maybe we should, though? Note to self… carve out time to read Uncomfortable Conversations with a Black Man which has been on my pile unread for too long.)
Granted, I created the opportunity to ask the question by giving the presentation. That’s the point of my writing and talking about the topic in the first place! I am very aware that I am somewhat more open in discussing my physical condition than others in my situation. (Hell, I’m more open than most people in talking about just about any topic with complete candor; in fact, it was the recent meeting of a fellow blogger with a similar lack of personal filter, sharing intimate details about his own life’s journey, which inspired me to get my own stories flowing again!) But I do want to make a conscious pause here to state:
Opinions expressed are solely my own and do not express the views or opinions of all people with disabilities.
Usually the above statement is used referring to employer / employee relationships and not to people with disabilities, but it somehow felt appropriate here. While Emmanuel Acho literally wrote a book to open the discussion, there are certainly other black men who would prefer that you don’t talk to them about their race at all. I think there are similarities for people with disabilities, but this isn’t a comparison of race with disability or any other defining feature. It’s more of a reflection on humans in general. (We’re all more similar than we might think, after all.) That’s where the legal disclaimer really applies to the question at hand, though. There’s no single answer for how to talk to people about their disabilities because the interaction depends on so many other circumstances they experience in life. How I prefer people approach me about my disability is solely my own opinion and does not express the views or opinions of all people with disabilities.
The topic brought back a number of memories of my reactions in different situations. My reactions are as wide of a spectrum as the situations themselves (go figure). The only thing consistent among these experiences is that I typically mirror the other party. If you approach me with an attitude of disgust, disrespect, ownership, or general rudeness then I will almost certainly respond in kind. And yes, all of those have happened… it’s really incredible how many people (mostly kids, sure) have thought it was OK to come up to me, grab one of my hands and start inspecting and criticizing what is absolutely beyond my control. These individuals are met with a very terse Jim who quickly ends the interaction.
Then there’s the gawkers. The rubberneckers. The ones so fixated on this abnormality that they can’t peel their eyes away from the wreck on the interstate. My reaction is typically to begin to remove myself from their view, much like the sheets used to shield the scene of the wreck from passersby on the highway.
But truly… those experiences are rare and almost always with children. Children who don’t know any better, and we’ve come full circle to “I want my kids to be aware and respectful.” The fact that you’re asking the question for that reason, or even just reading this blog means that I think you’re on the right path already. You’re already interested in differences between people. You’re interested in another human being’s story. I assume it is without malice because the bullies and people oblivious to someone else’s struggle are rarely interested enough to get this far in a blog! (And let’s keep in mind that a person with a disability may, in fact, also be a bully or ignorant jerk. As a pre-teen I once encountered a girl several years older who had hands VERY similar to my own. I introduced myself with enthusiasm thinking that she would be as excited as I was to meet someone with this similarity. I was shocked when she bitterly dismissed me like a side dish she hadn’t ordered.)
I’ve shared so many reasons why it’s such a difficult task to give a single answer to this question, but let’s be productive and toss out a few ideas just for grins. Here are my top 8 tips for how to talk to people about their disabilities:
- Introduce yourself. It may seem trivial, but introduce yourself as a fellow human being. A peer in the world. Make it clear that I am not a specimen.
- Be your genuine self. Believe me; we can sniff out false pretense a mile away. Sometimes it’s fine, “My kid is curious so we came over to say hi.” Yeah… your kid. Sure. 😉 But making up a story, “Oh I saw you struggling…” starts us off on the wrong foot. (Unless it was on the rare event that I am actually struggling, of course!)
- Don’t assume. Just because my hands and arms are different, don’t assume I have other disabilities. It’s quite interesting how many times I meet someone new and they start talking in a louder voice thinking that I might be hard of hearing. I’ve also seen people give a pat on the head to an adult in a wheel chair as if they were a child. How ya doin’ champ?
- Know your audience. As you interact with the person, be aware of their reactions. Are they enthusiastic? Are they starting to withdraw? Do they seem annoyed? Are they volunteering more than the question asked? Being aware of things like these will tell you how welcome this personal invasion really is.
- Ask questions. This is your chance, right? If there is something on your mind and you’ve found that rapport, let ‘er rip!
- Don’t force finding things in common. It’s just awkward for both of us. Oh you know someone who lost his thumb? Neat. If, however, you want to gripe about how terrible spherical doorknobs are, I’ll buy the first round.
- Honor boundaries and wishes if they don’t want to talk. Not everyone is open to sharing details of their life or body with others, especially a complete stranger. Remember this is an invitation into my world and my life. Honor that.
- Bonus: Ask me if I would like to ask any questions of you! This is a fun thought and even having written those words, if someone ever asks me this I will be stunned and likely speechless, without a question to ask. Maybe I’ll be able to stammer out something like, “What’s it like to live in a world built for you?”
As I revise and edit this draft over five weeks (gimme a break, I gotta job), I am starting to feel like I wrote a list for “How to Human.” Is it all really this obvious? It seems so. But all I need to do is reread the early paragraphs here and remember the experiences from folks who quite obviously do not know how to human, so I’ll let the post go out as a list of suggestions for people to talk to others about their disabilities… knowing full well, it’s really just a list of things to be a good human.
great post. glad to see/read your thoughts!
Thanks for sharing this, Jim! Your candor is so helpful to those of us that want to be better humans.