Gary Dietz knows you are just trying to connect. But you could try to connect with his son—as a human being—instead of adding to the feeling of marginalization by asking questions as if he doesn’t exist.
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A strong shoutout to Mochadad Frederick J. Goodall for the article that inspired this response. If your child experiences a disability, just add my five to Frederick’s five. (There are a LOT more I assure you…)
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When I am out with my son, we get all sorts of comments. Just like Dads of typically developing children. However, Dads of Disability get the extra sauce in this area of life as well. Here are some of the things I get asked or told.
1. What’s his diagnosis?
Well, let’s see. You are a complete stranger and you are asking about the medical, developmental, and behavioral details of my son’s life. IN FRONT OF HIM?! Let’s see. How about none of your business? I know you are just curious. I am curious about why that lady over there is wearing really inappropriate clothes too, but I am not going to ASK her.
2. I know a kid like him
Really. You know a kid “like” my son. Through a single glance, you know the hopes, dreams, challenges, ups and downs of this very complex and unique individual known as Alexander. And you know enough from that single glance to let me know that you know a kid “like him.” And even if you did, so what? You want a medal?
My favorite response to this question is “Like him? You mean you know another boy?”
3. That’s OK, I understand
When my son attempts or actually makes inappropriate contact, you’ll say “That’s OK, I understand.” Look, I know you are being nice. And patient. And I sincerely thank you for that. However, it is *not* “OK.” You should probably say, in as patient and understanding way, “You can say hello or shake hands, but I’m sure you know not to touch strangers.” (I know, it’s a lot to ask you to learn. But I have seen people react that way, so I know it is possible!) My son is a cute early teen now, but if you wouldn’t react that way when he is a 6′ late teen, you probably shouldn’t react that way now.
4. I wish I could be in that cart (wheelchair-like vehicle)
My son uses a Kid Cart when we go on longer walks or when he is really tired. I can’t count the number of times that people of all ages, genders, and walks of life have said to me or my son “I wish I could be sitting there!”
Really? You wish you needed an adaptive device to have mobility?
5. My grandson has autism too
First of all, how do you know my son has autism? And even if he did, why do I need to know your grandson had autism too? Look, I understand you are trying to make a connection with us. Maybe even a special one. If you do have “special” sensitivities to what you think you may be encountering with my son, just be authentic. Say hello to him. Ask him if he is enjoying the day. Jeez, maybe approach him like you would approach ANYONE ELSE.
I’ve been tempted to respond “My Grandmother had gray hair too” or “My friend is black too” or “My mom has age spots too” but I haven’t done that. It would be rude, wouldn’t it?
What ones have you heard, Dads?
Gary
(Author’s note, 31-May: I’ve received feedback that the tone of this post is “snarky.” I agree that the tone of this “list style” social media post could be construed this way, esp. by those who haven’t repeatedly experienced these kinds of comments from strangers. Perhaps I could have included more straight “advice” in this piece. Many other pieces I write, and my book, will not take this tone so much. Thx – Gary)
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You can download sample essays and poems from Gary’s latest book at http://blog.dadsofdisability.
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Photo: honzasoukup / flickr
I think there just comes a point where you can honestly say I don’t want to deal with you stranger. As a father of a tween with multiple disabilities, I have a full time job, and if I’m able to get out alone with my kid, I don’t want to spend an hour of my outing time explaining my child’s disabilities to you while she is sitting there not getting to hang out with me. If you HAVE to talk to us, then talk to HER. If she doesn’t respond to you, then she doesn’t want to talk to you.… Read more »
As for your question; What ones have you heard, Dads?
Passers by often notice and approach me when I converse with my daughter in English and Sign Language. They then stare at my daughter and ask, “Is she deaf?” I reply, “No, Isobel is hearing.” This is often over enthusiastically met with, “Oh, I am so pleased for you.” I respond, “Isobel has global development delay, cerebral palsy, epilepsy, microcephaly and quadriplegia.” At which point they are usually too dumbstruck to do anything other than hobble off into some dark, forlorn and forgotten corner.
Your perspective is clear and your advice is cogent. I notice that some of your advice could easily be generalised to a variety of similar situations. Mostly ones where someone finds out something about you (illness, disability, problem life situation, flat type on car, you-name-it) and then proceed to ask the same/similar questions (what’re ya going to do about it; similar thing happened to me; yeah I understand your problem; grasp any old ‘silver lining’; then have a half baked personalisation similar to 2). In essence you are being treated as a person burdened with a problem – and that… Read more »
I find it hard to believe that anyone would ever say such idiotic things! Wait, scratch that. I totally believe it. Similarly, people will often blurt out rude things in public if they don’t they’ll offend someone (such as some racist comment or “that’s so gay”, etc). I may be a white male, but racism, sexism, etc, offends me, and I make a point to call people out on it who are saying it often because they think “it’s safe”. I appreciate the humor inherent in the article. As someone who has a “terminal” illness, I understand the scope of… Read more »
Corine, Thanks for a great perspective. This “list” is not personalized to me. Actually, it comes from hundreds of conversations with other dads (and moms) over the years. They key to what you say to me is this: “(a) I have no issue with people asking me about it and there is no discomfort for me to talk about it. (b) He’s aware of his multiple diagnoses. (c) He can talk about them, too. (d) Speaking about it brings about awareness.” a. You don’t, and I don’t – but time and place. Not IN FRONT of my child. Right time… Read more »
As a parent of a special needs child AND a Special Education teacher, I have to say that this list is really personalized to you and what bothers you. I literally explain to someone, at least once/day about my son’s diagnoses (one of which is a very rare immune disorder that is fatal to 80% of the children diagnosed with it). He sees, literally 20 different specialists! I have no issue with people asking me about it and there is no discomfort for me to talk about it. He’s aware of his multiple diagnoses. He can talk about them, too.… Read more »
Glad to see this from you (snarky or not), Gary, and I hope the new book does wonderfully well!
Oh, my goodness, Gary! You have typed what I scream in my head just about every time someone addresses me in front of my daughter! “What’s wrong with her?” is a frequent question. i reply, “Nothing” and move on- unless the questioner is a child; then, I just say, “Her legs work differently than yours. Is that OK?” They don’t need to know the rest. One thing that others need to understand: My daughter does not know the extent of her diagnosis. I am not going to burden her with the knowledge that this is degenerative and fatal- she wants… Read more »
Gary, you’re one of my new heroes. 🙂 People… if you’re looking for “education” there’s a crapload of disability etiquette websites out there. Go look some up. They ALL say: talk directly to the person with the disability… do not assume ANYthing… people are more than their disability… do not touch someone’s mobility equipment…. people are people…. treat them as you would treat anynoe else of the same age, gender, etc. Gary’s intent here was not to teach you anything. You know why? HIS SON IS NOT A TEXTBOOK FOR YOUR EDUCATIONAL NEEDS. He is not there for your educational… Read more »
Amy,
Wow. Thanks!
I do listen to all opinions and adapt to them. Sometimes, you can’t win for losing. But I really do learn. Glad I have a new fan. Contact me offline about my book, if you like.
Cheers,
Gary
I think this isa great article, I myself have heard some of these same comments, the one i hate the most is “oh, i know how you feel” and yes ive snapped at people who have said this to me, another i hate is “she dosent look like she has autism” really? its like me saying “oh you dont look gay”. Another “lable” i hate is “your child is AUTISTIC”, my child might “have” autism but it does not define her, she is not limited to a diagnoses. She is a loving, happy, energetic kind soul, she is a music… Read more »
All these points you make are really valid, even if snarky, you have the right to be so! The parent of a kid with special needs is their child’s fiercest supporter, advocate, champion! The only point I ask you to think about is number 3, where you suggest that the stranger correct your child’s behavior. I know a lot of close friends who would be reluctant to correct my child’s behavior when I am around, because it would imply so many things (real or imagined)–that the parent isn’t doing their job, the child doesn’t know how to behave, that the… Read more »
Great comments so far thanks! Perhaps a more accurate title for this piece should be “Five things people shouldn’t say to a dad of a child with special needs, but that will be said anyway, and internalized sarcasm for the listener to fantasize about before answering with compassion.” In a deeper way, I had hoped this list, for “those not in the club” would be some form of education. I can see where it would be rejected as too rough. On the other hand, rarely if ever to I respond in the ways listed below the heading. Again, what I… Read more »
I am not sure I agree with the article, or at least I view the situation from another point of view. I am not saying one way is its right or the other is wrong. As a father of a special needs child, I see all those actions as some form of interest or attempt to understand or relate. “What is his diagnosis” is a more PC way of saying “What does he have so I don’t say the wrong thing and look like an idiot.” The rest are just ways people try to relate and be civil. I sure… Read more »
I don’t think asking ‘What’s his diagnosis?” is ever appropriate. If I see a 300lb woman in a electric cart, is it appropriate for me to ask why they are in the cart? Nope, and it isn’t when you see a special needs child or adult for that matter. Also, I think we need to separate the sarcasm of the article, which I think has just the right amount of snarkiness to bring out how annoying it might be to hear these comments repeatedly, from the actual responses that someone like Gary makes when encountering these comments. Based on what… Read more »
Janice,
Thanks for the kinds words, and summarizing much better than my article did!
This can be a problem with the “sensational” ‘5 ways to do X’ style of writing. It really deserves a deeper analysis — and there is a lot of it around the disabilities communities on the web.
I’ve been given a lot to think about. This always happens when your writing gets exposed to the masses. Thanks!
Even though I agree with every point you made, I do feel that it isn’t entirely the people’s fault when they are making an effort in those ways.
As a social worker and mental health specialist, I have come across numerous people who don’t even understand their own diagnosis, so why should we assume others understand it too? We need to start educating about mental and developmental health earlier on so people have a better understanding of what they see and how they should interact.
Jeremy – I see your point. However I disagree with the first part — and strongly agree with the education part. When a stranger walks up to someone to communicate, why does there need to be *any* understanding of a diagnosis? As you know, not all disabilities are visible and of those that are, someone who meets you the first time will have no idea how it impacts the person. This is parallel to meeting anyone — you don’t know their capabilities, mood, or desire to communicate (or not) at all, until you try. Case A: You talk to a… Read more »
James and Linda, I understand your concerns. Appreciated. But please re-read the intro: “Gary Dietz knows you are just trying to connect. But you could try to connect with his son—as a human being—instead of adding to the feeling of marginalization by asking questions as if he doesn’t exist.” Joylyn understands, and I think she analyzed my point well. Treat my child like a human – like you would anyone else. I love her idea of an essay on what to do (versus what not to do). But hey, this was a list born of frustration — and a direct… Read more »
Your post is snarky, as it should be. Snarky is not bad, always. We need more of these types of articles, as people can be so rude! Maybe a list of things people can do and say would help. 1. Please address my child directly. Smile, and act as you would with any other child. If you generally talk to strange children (I do), then talk to my child in that same manner. If you generally ignore children, then ignore my child as well. But don’t change your approach simply because my child is in a wheel chair or looks… Read more »
guess this article means well, but it makes me afraid to approach someone with a special needs kid. Just seems like everything a well-meaning person tries to do is wrong. You could gently say to the person – it’s okay, he would love it if you spoke right to him. How would a person like me know what to do otherwise? This article just sounds like you’re just gonna be upset no matter what people try to do. It could be a teachable moment, but seriously I would be afraid to go near the person who wrote this.
Linda, My son was not born to be a teachable moment to the world. Although, as many advocates (and I too) believe – we do this as much as we can. (But it does get tiring – and I don’t like to talk about my son in front of my son- how rude and bad for him!) You hit it on the head though when you said “You could gently say to the person – it’s okay, he would love it if you spoke right to him.” I do that *all the time*. It would be better if folks could… Read more »
I don’t know. If someone makes one of these approaches to me when I am out with my son, I could be annoyed but mostly choose to honor the person’s effort. There is something positive to appreciate.
James, in the real world, I do appreciate the efforts. However, I’d like to hear your opinion, esp. on #1 – What response do you give someone when they assume your son can’t understand every word they say? And how do you decline to share their medical chart while encouraging authentic interaction?
You can download sample essays and poems from my latest book “Dads of Disability: Stories For, By, and About Fathers of Children That Experience Disability (and the Women Who Love Them)” at http://blog.dadsofdisability.com/latest-sample-selections-from-the-book-now-available/
Book available in May 2014. Cheers!