I am a fairly easy going guy. I don’t really complain about the lack of ramps or parking when I’m out and about. The way I think about it is that it’s not really that hard on me if I don’t have front row parking and a ramp that is blatantly obvious. My mom gets very upset when someone parks in front of a ramp. My response is usually “I’m pretty sure there’s another one, don’t worry” I try to get into that person’s shoes who is parked in front of the ramp. Every time I do, I come away with the same conclusion. Put very simply, if I wasn’t in a wheelchair or around somebody everyday who was, I would probably do the same thing. Occasionally there is not another ramp and those people are always very kind when I ask them to move. Probably because they are more than a little embarrassed. The area of accessibility that I struggle with as restrooms. It doesn’t matter if it’s a restaurant or a hotel chain, everyone has a different idea what makes a restroom accessible. I have stayed in nice hotels before where the restroom door was too small to get my chair into and the room was classified as “accessible.” If I can somehow find a way to  get into the restroom there was a metal bar next to the toilet that I could hold onto. This is some people’s idea of making a restroom “accessible.” On the other hand, I have stayed in cheap hotels where the restroom door was big enough to drive a truck through and the restroom was almost as big as my actual hotel room.

I hear you saying to yourself “why doesn’t he keep track of hotels with the accessibility he needs and just stay there all the time, no matter where he goes? The answer, because every single hotel from city to city is radically different when it comes to accessibility. I can stay at comfort Inn in Oklahoma City, with a fabulous bathroom, roll in shower and the whole nine yards. If I go to Dallas and stay at a Comfort Inn the restroom might have all the same stuff but in a room the size of a shoebox, with a 26 inch door that my chair can’t roll through. Put very simply, you never know what you’re going to get.

I talk to people all of the time and when this issue comes up I often hear “it has to be accessible right?” The American’s with disabilities act has to be followed. Well, technically that maybe true, but I think there is a lot wiggle room as to what is accessible according to the ADA, at least this is what I found in my experience. Anyone who has ever broken their leg or had any injury where  they were confined to a chair for a short time, probably knows exactly what I’m talking about. I hear “man I had no idea” quite often. I think the reason accessibility is so subjective is because the people putting in accessible doors and ramps are able-bodied people who may not necessarily take things like arm strength, into consideration. They may think if a door is easy for them to open it must be easy for everyone.

I understand that it’s complicated because wheelchairs come in all different shapes and sizes. You can’t account for everything. That said, I’m pretty sure every wheelchair ever made will fit through 36 inch door. I’ve often thought since I got out of college that I shouldn’t really need to find a job because I would be the ultimate accessibility test, and I should get paid to consult with companies all over the world. Maybe that’s just a dream, but I think it would be fun.

What’s the worst example of accessibility you have ever seen?

Thanks to Evie for giving me another great comic to work with. I often wonder if this situation came up and she was with me, what her plan B might be?

I have a friend who says I can’t go out in public anywhere without meeting someone who knows me. In high school I was the one guy out of 1500 kids in wheelchair. In a situation like that, you are extremely hard to miss. In college there were two or three people on campus in chairs. Once again, all of the other 7000+ students knew who we were, if they didn’t, they weren’t paying attention. Add in the fact that I have a big personality, am open with everyone, and you understand why I have always been a minor celebrity.

To this day my mother will go to the grocery store and run in to someone who says “you’re Jamie’s mom” my mom has really learned how to roll with it, she’s great with people. It’s not a bad thing people remembering you, but every so often I don’t remember them. They come up and say “you’re Jamie. You haven’t changed at all, do you remember me?” Sometimes, I admit that I don’t. Most of the time I ask them what they’re doing, what’s going on in life and do my best to figure it out. I’ve often thought that everyone should wear name tags. The problem there is, most people are like me and have really bad handwriting. I can write something down and have no idea what it says five minutes later. Does anybody else have a problem? We have all gotten so spoiled with computers that no one really has  good penmanship anymore.

It’s not so bad unless I call somebody by the wrong name, I hate that. On the other hand, people routinely call me by another name Jimmy, James, it happens a lot. I don’t really get offended by it I just answer to whatever they call me. I know that even though they may not get my name exactly right, they know they’re talking to. The part of the conversation that you have with someone you haven’t seen in a while that bothers me is the “so what are you doing now icebreaker.” People look at you kind of funny when you tell them you are self-employed and work on the Internet. They have kids and lives and whether they’re good or not, people are always ready to tell you what they have been up to.

That’s the key in the conversations for me. Most people just want to talk about what’s going on their lives. So, I do my best to listen and explain how i’m trying to make money writing a blog, without sounding like a loser.(That’s really hard). Normally after seeing someone I haven’t seen you in a while, I’m very thankful for my life, for the way things have turned out. I have to admit, it really is nice to be  memorable. The fact that I am makes me think I must be doing something right. At some point, someone is going to invent an app where you can discreetly take a picture of someone’s face as they’re talking to you and the app we will feed you information and remind you who this person is. That’s a scary thought.

What is the most clever way you have  figured out who someone is? Gotten a peek at their drivers license? Were they wearing a name tag from work? Let us know in the comments.

This girl named Evie did the art. She’s unforgettable. Give her a round of applause folks.

People have this unbelievable fear that I’m going to run over them. If I’m within 30 feet of them they start moving out of my way. They move their kids like Godzilla is coming to eat them. I have to admit, it kind of gets to me sometimes. I’m not sure I have ever actually tried to run over someone. I can’t speak for other people in chairs but, I work really hard to always know who is around me. I know people already have their doubts about me, I don’t want to reinforce those doubts or worries by being reckless with my chair. In crowded situations it really hits home that people are genuinely afraid. I guess I can understand, but it’s almost as if people don’t believe I’m in control of my faculties or  mentally capable of using a wheelchair. Sometimes I believe that people think I’m going to have a seizure and fall on the joystick losing control and taking them out in the process. That’s what he feels like anyway.(I don’t suffer from seizures.)

Kids love me, they are not afraid at all. They will climb over the wheelchair, with no fear. It’s the parents that are unsure. I get wanting to protect your kids, but sometimes the way  parents move them when I am in the area, I feel like a creepy stalker who is hanging out at Chucky cheese during a kids birthday party. I’ve been in the chair my whole life, if I want to run over you you won’t get away I promise. (that’s a joke, I only run over bad people, yep still joking).

Occasionally, I meet someone in public who truly deserves it, and the little voice in my brain says you can totally get away with it, They are the ones who are completely oblivious that I’m sitting behind them and there’s no possible way I can get by. I think this has a lot to do with electronic devices, everyone has one and we all use them in places we shouldn’t.. It’s easy to get lost in them, I know.  I always resist running over those people, because when they finally realize I am there, I see the fear in their eyes like everyone else. As I write this I’m hearing a quote ‘with great power comes great responsibility(yes I watched entirely too much Spiderman as a kid),

I’m not really sure what the point of this post is other than to say I AM NOT A MONSTER and I am aware that you’re standing next to me. The question of the day, have you ever been afraid that someone in a wheelchair was going to run over you? If so, why?  Happy Wednesday everybody.

Thank you Evie for once again making me look cool

I pride myself on being low maintenance and as self-sufficient as possible. If you’ve been reading very long, you know I need a lot of help, more than I would like to admit  honestly. Today’s comic is great because in my room, which is probably the most accessible room in the house for me, I can’t reach the string on the ceiling fan to turn on light. I sit in the dark most of time, which I don’t mind (it’s easy on my eyes), but the light would be on more if I didn’t have to ask for help every time I needed it. I’m actually in the process of having my room modified so that lights and window blinds will be accessible by voice. The process is taking longer than I would like because there are lots of hoops to jump through to get it paid for. When that gets done, you will see a post about it, hopefully with video included.

I know turning a light on or off seems like a very simple thing but I have to admit I’m extremely excited because having one more thing in my life that I have control over is amazing. There are 3 million things on a daily basis that I can’t control. Just a few examples, I don’t choose when I go to bed. That’s a big one for me, I haven’t found a piece of tech to help with that yet. I can choose where I want to go but only if someone is available to get me there. If I wanted to go to the store today for example. it would be hard because no one’s around today. Another big one for me is that I can’t use the restroom if no one is around to help. That means if I know I’m going to be alone for several hours, I have to be very careful what I drink so that I can be comfortable. I’m not whining or complaining, it is just part of my life. If I could change just those three things with the aid of some piece of tech, it would probably change my entire life.

Cars that drive themselves really intrigue me, but I’m not sure I would be brave enough to get in one. I love technology so I probably would. Once I did and could go anywhere, watch out, because I would use it all the time. Going to bed when I want only requires having someone around who keeps the same hours as me. I suppose I’ll find that eventually on a more full-time basis. I could wear a catheter to solve the restroom issue at least partially, but if you’ve ever worn one, you know they are not a lot of fun. They serve a purpose but it would be a struggle for me to use one every day. In my brain I think I just need a robot around all the time whose only job is to help me. I’m sure that’s coming at some point.

What is something in your life that you would like to have more control over?

Say thank you to Evie folks for another fabulous comic. She is the closest thing to helpful robot that I have. She makes this blog so much easier.

Today’s cartoon made me laugh because it is absolutely true. I have lived in my parents house for my whole life. There are two reasons for this. The first and most important is that like it or not, I need the support system. I just need help. The main two areas that I need help are dressing and bathing, yes I said bathing. More people have seen me undressed then the world’s biggest porn star. I’m not modest because I can’t afford to be, it’s just something that I have to be okay with to function on daily basis.  I stay in my room a lot. I always have. my family actually makes jokes about it. They tell people that I (stay in my cave). It’s very true, I do, and I don’t deny it. I do it because it’s the only place really that I can do things on my own. Watch TV, Play video games, work on this blog. Everything in my little command center has been set up so that I don’t have to ask for very little help. There are lots of days that I only come out for meals. Evie probably reads these posts and thinks that I talk about her a lot, the reason why is that she is one of very few people who spend time with me inside my sanctuary everyday.

Privacy is something that every human needs but when you are handicapped you have much less than the average person. It works the same way for my family, they don’t have nearly as much privacy as they would have if I were a fully functional man who didn’t need help. I am in their space and they are in mine. It grinds on all of us sometimes, but on the other hand, you have to learn how to be patient with people very quickly. Although I have gotten used to it, I think most people take a lot for granted. When I shower, I may not have someone in the shower with me all the time but they are close by. Much like what you see in the comic. Some of the same questions even.

Secondly, up until just over a year ago I had no other help besides my family. Jane showed up about a year and a half ago and has made lots of things possible. I can now go where I want to go and do what I want to do within reason. I can go find a house now if I would like but getting one put together with all the appropriate Lifts a large bathroom, roll in shower, and all the other things I need is not an easy (or cheap) task. I will get there eventually, but in a situation like mine you have to be sure all your ducks are in a row so to speak before you jump. I’ve lived this way for so long that I’m not even sure what I would do if I had more privacy what would be different? I’d wear less clothing most likely 🙂

What do you value about your privacy?

Evie has nailed the comic one more time. I couldn’t do this without her. Thank you for all that you do.