Most people

Okay, so there are the people like those chronicled in my last post, but most people really are lovely.

Like the physical therapist we ran into a few days ago, who was so interested in my boy's Permobil Koala powerchair. My defenses were up, but it turned out her interest was for the children who are clients of hers and could use a chair as cool, kid-friendly, and powerful as my boy's "red racer." She was just lovely.

Like the balloon man who made both my kids great balloon animals and asked for nothing. He didn't treat my boy as a poor kid who needed a lift, rather the vibe I got was that he just thought both my kids were cute and could use a balloon. Just lovely.

Like the airport baggage handler who so appreciated the laminated direction-sheet I had hung on my boy's Koala in a purely self-serving attempt to prevent damage. He said he wished everyone did that and stuck around to meet my boy. Just lovely.

Like the train conductor who made sure my boy and his Koala got good seats on an old historic (1920's) tourist train, and checked in to make sure we didn't miss a thing. Just lovely.

Like the young couple traveling cross-country who offered to take a picture of the entire family, and even help us traverse some challenging terrain. Just lovely.

Like all the people we encounter everyday who simply greet my boy just like any other kid...or look right past us as they would any other family traveling down the same sidewalk.

And, like all you wonderful readers who have sent me such lovely, thoughtful (and thought-provoking) comments about my last post.

"Thank you for taking care of him"

Can you believe it? In the middle of a restaurant parking lot, some bozo calls me over after my boy has driven up into the van and ends up spouting the sentence in the title of this post. Followed, of course, with a "God bless you." (and I didn't even sneeze!)

As Paul Harvey would say, here's the rest of the story...

The family and I had just finished a very good lunch on a beautiful day and were just generally having a great time. Everyone loads into the minivan (my boy does so, of course, by driving up the ramp that has been deployed from the side of the van). I go into the van to transfer him from his powerchair to his car seat, then attach the tie-downs to the Koala and close the side door/ramp. As I walk around to the driver's side, I notice someone in a white pickup truck motioning in a way that a police report would decribe as "furtively." I thought it was probably some tourist who needed directions. So, I walk over and here is the conversation with the driver, whose 12-or-so-year-old son was sitting next to him silently. My inner, unspoken thoughts are in [brackets]:

Driver: "I don't mean to get real personal, but [oh boy, here it goes, what now?] what's wrong with your son?"

Me: "Nothing [and **** you, you ****]"

Driver: "Can he walk? [really, you just saw him drive a powerchair out of a restaurant and you're asking this stupid question, d-***?]"

Me: "No, but that doesn't mean there's anything wrong with him, there's not..."

Driver (interrupting): "Oh, I wasn't saying that. [yes you were, you creep, and why the hell did I come over here in the first place?]."

Me: "He's a perfectly happy, smart, mischevious, wonderful kid who happens to use a wheelchair to get around, there's nothing 'wrong.'"

Driver: "Yeah, he does really look happy. [unlike your sullen kid sitting next to you thinking "please shut up, Dad"]. I just want to say thank you for taking care of him. [and **** you for being such an ignorant bigot]"

Me: (rather flabergasted as this is a comment I've not heard before): "What? What do you mean? What in the world else would I do? [you sack of ****]. My son, my family live a full, happy, wonderful life..."

Driver (interrupting again): "No, it's just, you know, I just went for a mountain bike ride with my son, and...God bless you."

Me: [And, so what? I've been biking, sailing, running, swimming, horseback riding, etc., etc. with my son, and he's done more cool stuff at his age than I did before I was a teenager. I'll bet he's done a lot more cool stuff than your kid, and he certainly has a better role model for a father...and I don't want or need blessings from someone as close-minded as you].

I said nothing else, I just turned and walked away, not even acknowledging his last sentence.

Two things: First, I know he wasn't trying to be a close-minded, offensive bigot. But that doesn't change the fact that he is. Second, I wish I had not been so gob-smacked, so shocked, so nearly speechless. If I face this sort of situation again, I won't say the bracketed obscenities, but I hope it will go more like this:

Driver: "I don't mean to get real personal, but what's wrong with your son?"

Me: "There's nothing at all wrong with him. He's perfect, but I can't say the same for some people's attitudes and discomfort with disability."

Driver: "Can he walk?"

Me: "If he could walk, don't you think he'd be walking? He does use a wheelchair to get around, but that doesn't mean there's anything wrong with him, and frankly it's offensive to assume that a mobility challenge means there is something 'wrong.'"

Driver (interrupting): "Oh, I wasn't saying that."

Me: "Actually, you were. I think you probably did not mean to cause offense, but it is deeply offensive to assume that people living with disabilities are somehow 'broken' or 'imperfect' or less happy or well-adjusted than anyone else. I don't define my son by his abilities or disabilities, my son doesn't define himself in that way, and you shouldn't either. We all have different challenges, abilities, and disabilities. His happens to be physical and pretty obvious. But that doesn't mean he doesn't live a full, happy, magical life. He does -- he's actually pretty darn lucky compared to most people on the planet."

Driver: "Yeah, he does really look happy. I just want to say thank you for taking care of him."

Me: "Okay, now I think you probably again didn't mean any disrespect, but that comment is so deeply offensive on so many levels. First, he's my son and what would you expect any parent to do? Second, it's not your place to thank me for anything. You don't know my son, you don't know me, you don't know his needs, you don't know everything he adds to my life, you honestly don't know anything at all about this situation, except that you saw a four-year-old leave a restaurant on wheels. What gives you the right to call me over and make a comment like that? Third, that comment assumes that I am somehow burdened rather than blessed by my son. And, not only is that ignorant and wrong, but how dare you make that assumption? Thank you for not abandoning your son by the side of the road the first time he threw a tantrum at 2, or the time he broke one of your favorite things, or whenever something happened that required some parenting."

Driver (interrupting again): "No, it's just, you know, I just went for a mountain bike ride with my son, and...God bless you."

Me: "And, so what? I've been biking, sailing, running, swimming, horseback riding, etc., etc. with my son, and he's done more cool stuff at his age than I did before I was a teenager. I'll bet he's done a lot more cool stuff than your son sitting here. He is not so limited by his disability -- the real limitations come from an attitude by others that he is somehow less-than, or broken, or unhappy, or unlucky, or what have you. I ask you to please consider your attitude and why it has so offended me. And, it's not your place to 'bless' me. You don't know me, and, frankly, I don't want or need your blessings. I have plenty already. Three of them -- my two kids and my wife -- are sitting right there in that van and I'd rather be with them than talking to you in this parking lot, so I'll say goodbye and ask you to please just google disability blogs and read a few thoughts from the perspective of adults and teens living with disabilities. I really think you might find it eye-opening."

Okay, I know that's a fantasy conversation, but it's my fantasy so I'm sticking with it. I do think, though, that since anything that doesn't kill you helps you, I can use this pretty disquieting experience to improve my discussion of disability with ignorant and prejudiced strangers who regularly feel entitled to comment on my boy.

A tale of two businesses

Okay, first off, I realize how ridiculously long it has been since I've posted anything. I expect that if there are any regular readers, they're thinking what the ----? And, quickly deciding to forget about my little ramblings. Okay, I'll try to do better. I have a lot of in-progress posts and will strive to get them all posted soon.

With that preface, on to the topic at hand. Accessibile shopping.

I live in a wonderful city that is generally pretty aware of the need to make things wheelchair-accessible. But, it is a city with many old (pre-ADA) buildings, many of which are very...quirky...and not necessarily easy to adapt as needed to permit shoppers on wheels to frequent them. This, I have discovered, will be a constant issue for me as I go through my city--whether with or without my boy at my side (or up in front of me, or dawdling several paces behind, or wherever that sometimes-naughty four-year-old decides to travel). You see, I sort of see the world differently now. Where before I never noticed the little step or stoop here or there, now I see them all as if they were six feet high. After all, any rise more than a few inches might as well be a few feet for purposes of my boy's powerchair being able to overcome it.

With that backgound (I promise to not start every other paragraph with a "With that" caveat), on with the story. Some weeks ago, I was preparing for my son's fourth birthday party. At his request, I had agreed to perform some magic at the party. I once dabbled in magic in a long-ago mini-career, but had not done much magic in many years (at least not the needle-through-the-baloon type of magic...I think there's lots of other magic that happens every day, but that's another topic for another post).

Despite living in a metropolitan area with several million people, there is only one real brick-and-mortar magic shop around. And, it has a step. Just one, right out front from the street into the door. And, it's tall enough to be an insurmountable barrier. I've encountered shops with steps like this before and been pleasantly surprised that they had a portable ramp in a back closet that they gladly brought out to allow entry. Pretty low-tech, cheap, and simple, but immensely effective and a just-perfect solution for a small business. But, this magic shop? No such luck. I knew this, but I really, really wanted to go there to get some supplies for the party. So I called and spoke with the owner.

I very nicely explained my situation--that I'd love to come shop there, but can't get through the door because of the step and would he please get a simple ramp or something so I can become a regular customer. Okay, so I said I was the wheelchair-user because it was much simpler than explaining I wanted my son to be able to come in, even though he wouldn't actually accompany me until later, etc., etc. The point is that I don't want to frequent a business that does not welcome my boy. No more than I'd want to go to a restaurant that serves me, but not my African-American family members.

Naive me, I figured the owner would immediately say "oh, I never thought about that and yes, indeed, I can get a ramp on Tuesday, see you on Wednesday." Not so. He was outright hostile. Basically said too bad, he doesn't particularly care that I can't get in. Couldn't be bothered to even look into the cost of a ramp, and essentially couldn't give a shit. Wow. That was shocking and infuriating. And, pretty profoundly upsetting. This wasn't just a case of some ignorant person staring at my boy, this was someone saying he does not want to be bothered with him. Needless to say, I bought my magic supplies on-line.

Depressing and infuriating.

Flash forward a week or so and I decide to go to a great old bookstore that I've been to hundreds of times. I know the entry is no problem. I know that even though there is an upstairs section, the children's section is on the ground level so I can take my kids there and get them some books. We arrive, with my boy leading the charge, and find out the store has rearranged the sections and now the childrens' books are up on the other side of four stairs. It's an old, quirky building crammed with books...one of those great semi-musty bookshops that has been around for decades. A real landmark. But, all of a sudden, unwelcoming to my family.

So, I ask at the counter to talk to the manager. Soon two men come to see me--the co-owners of the shop. I explain the predicament and ask if there is some way they can install a ramp up those four steps so my boy can grow up going to this great shop instead of just Borders or Barnes & Noble. The owners are very thoughtful about it, tell me they struggled with the fact that some of their shop is not wheelchair acessible, and have tried to do what they can with the physical space they have. They looked into a ramp, they say, but it just won't work in the space. And, I can actually see their point. There just isn't enough room in this quirky 100-ish year old building. They explain that they will do anything they can to accomodate...even bringing an entire section worth of books down to a customer who uses a wheelchair. And, I can tell they are serious and not just feeding me bullshit excuses. We have a good talk and I explain how much I was looking forward to my kids growing up and going to this bookstore (totally sincere and true). They get it. They give me their contact information. They explain they're having a meeting with the third owner next week and they will all discuss it again.

Then, a week later, I get a call from one of them. He tells me they did meet and did look into the feasibility of a ramp again, but that it just won't fit. I explain that maybe they can try a lift--not an elevator but a simple, fairly inexpensive (as these things go) platform lift that would enable someone to wheel onto it, raise it, and wheel off on the top of these four steps. He gets on the web as I'm describing this device and sees it and says they'll look into it. And I believe they will. And, even if it ends up not working out, I feel that they really will try. Because their building is so old, I think it is exempt from ADA requirements to some extent (although these experiences remind me I really need to learn the details of that law), so they don't need to do anything at all. But it's clear that they want to if they can. I'm left feeling like they don't hold my boy ini contempt like the magic shop ass. No, they respect him and his mobility needs. It's a world of difference and restores some faith in people for me.

So, that's my tale of two businesses. I guess the moral is that what you do, although very important, isn't as important as how you do it. Simply caring, and recognizing everyone's need for respect and dignity can go a long, long way to creating a less-imperfect world.