WORDS

This week I am going to help all of us understand what to say and what not to say to a disabled individual. After a quick search of the Google machine, one learns that there is already a wealth of information about this topic all over the inter-webs.

As with everything, some of the information I found has been labeled “expert” by people such as the faculty at Stanford University, Harvard or Yale. I’m smiling here as I wonder if all of their “expert” information has been published to help society or to cover their asses in case a disabled student on their campus realizes that there is no policy on this language. C’mon, sing along, wherever you work and whatever your profession: it’s known as “CHECK THE BOX!”….Of COURSE we have language and policies about disability. We have policies about everything! Go US!

Alright, maybe I’m being too mean. Some of what I read is useful, and I am almost positive that these policies had input from humans who are actually living with a disability. Speaking of which…a quick note from the World Health Organization:
The disability community is the largest minority group in the world: around 10% of the world’s population, or 650 million people, live with a disability.

To put it bluntly, besides knowing me, you likely know someone else who is living with a disability. My retired family doctor once told me that if we all live long enough, we all become disabled. True enough…..so why do some people not know how to handle/approach/speak to/react when around a disabled human? My answer: no one ever taught you how to normalize disability in society.

Today you did not rise from bed for no reason! Of course there is no “one right answer” about how to speak or interact with anyone. First, you need to read the room and the people in it. Are you talking with someone who is outgoing? Shy? Socially awkward? Talkative? Is this a group or a one on one conversation? Are you at work? Somewhere in public? There are an infinite amount of situations, and as you live longer on the Earth, you (hopefully) learn how to navigate.

I’m here to share a few things with you that I believe to be universal, and contrary to the people at Stanford, I will list some situations that I have personally been involved with…

Never ever pat someone on the head if they are sitting in a wheelchair. Do you wander around patting people on the head if they are sitting in a restaurant? NO NO.

I am not “suffering from muscular dystrophy.” I am a person living with muscular dystrophy.

I am not “confined to a wheelchair, wheelchair bound (that’s the worst one) or even IN a wheelchair.” I am a wheelchair user. I get out of it, sit on the couch, sleep in a normal bed, and I certainly don’t take any kind of wheelchair into the shower. News flash: I don’t use a wheelchair on the toilet either. C’mon everyone….

Don’t apologize for asking me a question. I love to answer and educate everyone about my journey.

If you are a stranger and you randomly ask if you can “pray for me”, I hope you are also saying that to everyone you interact with today, or better yet, you are an ordained individual of the religion that you have chosen to follow.

While we are on the subject of pity….I personally want none of it. I’m not a hero because I use a wheelchair. That’s foolish. I am a hero because I have survived more than a decade of marriage without my wife ending me in my sleep for saying something stupid. Ok, that might be harsh, but if you know my mouth AND you know Vanessa….well, there you go. Then again, due to my condition, I am unable to get life insurance (THAT is a topic for another blog), so she needs to keep me around. While we are at it, I’m also not “brave”, “beating the odds” or “rising above my challenges.” Don’t tell me “God only gives us what we can handle.” All of these things sound like pity. In fact, if you say these things to me, I AM also thinking it about you and I feel sorry for your restricted world view. Yep, the gloves are off.

If you are unsure how to interact with someone who is clearly different from you, it’s better to show respect by being direct: I love it when people ask me “Do you mind if I ask you about your condition?” Usually I answer by saying: “What condition?” hahaha. I’m funny.

In public, I often ask where the elevator is, and the person answering will speak to whoever is with me. That’s annoying. I asked the question: answer me please.

Don’t make a big spectacle of getting down on a knee to talk with me. Unless you are about to propose, then it’s fine. I’m well aware that you are standing and I am sitting. I’m used to it. Sometimes the air smells a little funky in the elevator at my level but hey…that’s part of this life.

I don’t have “special needs.” We ALL have special needs. Listen closely to other people ordering food in a restaurant. Everyone is special….just like everybody else. I want my steak prepared like the Bruins chances for winning hockey’s Stanley Cup this year: RARE.

Disabled individuals have skills, talents, needs and wants. That includes a sex drive. SO many people have asked me “if things work.” Do you ask that of everyone else? Weirdo! Ask me about my skills and talents.

If I wasn’t living with a disability, I wouldn’t know how to speak with a disabled person either. Don’t feel bad. I will pray for you after I pat you on the head…

Speaking of which, when I still used a manual chair. I was at a music festival with my students and music teacher friends, when another colleague said he “needed a moment with me” (I was coordinating the festival). He unlocked my brakes, and rolled me backwards out of the circle I was in. Aghast, I receded to the hallway under his power and then I lost my shit. He thought he was being funny. Not funny.

Another favorite is people who park their vehicles on the lines between accessible parking spots like they are unsure if it’s a spot or not. You, my friend, are an asshole. You know damn well why the lines are there…..and no, it’s not ok that you are parking there “just for a minute.” Don’t be a dick, you dick.

Finally, I am not a “victim” to my disability. You are a victim for choosing to read yet another blog to its end. I cannot speak to the entire world population of people living with a disability, but if you see me, you know what to do: smile, say hello, and ask me what’s up. I will likely smile back, but you won’t know what I’m thinking until we get into a conversation…..then it will be clear since one of my skills is brutal honesty from my point of view. Trust me when I tell you that it’s been a double edged sword all of my life.

Stay safe, stay awesome, stay aware, and stay tuned. Want to know what disabled life is like? Buy a used wheelchair online and use it for 2 hours in your own home. Feel like a hero? Not so much.