Why hello there! My name is Jake, as if that wasn’t already made quite clear. But anyway, I’d like to welcome you all to my website and thank you for paying me a visit. I am a young adult, and have been blind since birth. I have an eye condition called Leber’s Congenital Amaurosis. Most people just call it LCA, and I think you can too. I’ve also heard this condition called Leber’s Optic Atrophy, which I suppose would be LOA but apparently nobody says that. Anyway, this is a rare eye condition which has something to do with the retina in the back of the eye. That’s about all I know in terms of medical stuff. Some people with Leber’s have an accompanying kidney disease. I happen to be one of those people, and I have what is known in the medical field as polycystic kidney disease. Don’t ask me to explain this, as you won’t get a very good answer. Basically, it is a group of cysts on each kidney. This is derived from “poly,” meaning “many.” But, what I will also tell you is that I had 2 successful transplants. I only have light perception, and cannot make out any shapes, colors, or anything of that nature. I have been a screen reader user for several years. At the end of this page is a link to the company that makes one of my screen readers of choice. Actually this one is more than just a screen reader. Click on the link at the end of this page to learn why. I love assistive technology. I think it has opened up doors for people that otherwise would’ve been bolted shut. But in addition to assistive technology, I learned Braille grades 1 and 2 as a child and am now fluent in them. I still use Braille for some things, but I primarily rely on speech output. Some people prefer it the other way ‘round, and that’s cool too. I suppose Braille and speech work in conjunction with each other a lot of times. My original ambition was to become an assistive technology specialist, but I was more or less discouraged from doing that by my state voc/rehab agency. Long story short, there was a serious communication breakdown and nobody cared enough to admit that they had screwed up, let alone apologize for their mistake. Well I suppose that’s enough of an intro, but please do explore the site and see what hidden gems lie within. In addition, you may wish to click on http://www.my-diary.org/users/761688 . Yes indeed folks, you get 2 for the price of one! So have fun and enjoy!
Hey everybody. I want to tell you about something I did over the weekend. On April 25 of 2010 Mushroom FM was launched, and this was their 3rd birthday. Those of you who haven’t heard of this great online radio station, just click on the Bookmarks link here on my site and check it out. I was one of over a dozen listeners who registered for this trip to Scotland’s Agairg Castle, and my what a trip it was. As a matter of fact I’m still recovering from it, and we got back late Sunday night. The doors of Agairg Castle opened up on Friday afternoon and that is when all the fun began. I spent almost the entire weekend, along with others, trying to figure out who the heck committed the crime of murdering Mr. Hank Cash of the Boing Boing Rubber Company. All this while dancing the night away to a lot of great music, and eating a lot of yummy food. I did manage to imbibe myself more than a little bit when I was inside the castle. I think others did too though. But fear not, I did manage to sneak in a few hours of sleep over the course of the weekend as well. I’m happy to report that the jury reached its final verdict, and the guilty person was taken to jail. But this person only ended up spending one night behind bars before they were allowed to roam the streets again. I’d like to thank the awesome staff of Mushroom FM for putting together this trip! Links are provided on their website for your listening pleasure. Perhaps someday I’ll actually go to Scotland, but that remains to be seen. I was in England several years ago and had a wonderful time.
Hello everyone. I previously mentioned on here re-registering for ADA paratransit, and I want to expand a bit on that. I can honestly say I was more than a bit reluctant to start using the service again mainly due to my lack of sufficient outdoor travel skills, but upon being deemed eligible I was quite pleasantly surprised. The paratransit service for the area of Chicago in which I live is now being managed by First Transit, and they are doing an excellent job. I started out having my life-skills tutor ride with me on the bus to and from the Young Adult Program, a social group I mentioned in a prior entry on here. Then we progressed to having him follow my rides in his truck, just to make sure I was dropped off safely and at the proper locations. That ended up being the course of action for a few paratransit trips, and now I do it all on my own. He just meets me there when his schedule permits. I’ve since taken paratransit trips a couple other places, and I’ve assured myself and others that this pattern will continue. I have found the drivers to be most helpful and courteous, and the same goes for the reservation operators. It can still be a bit of a pain getting through on the phone at times, but the hours of operation for the phone lines have been greatly extended. I’m pleased to say that I have yet to report a problem, either with a driver or a reservationist. I hope I never have to do this. To those of you who still have to deal with poor paratransit service, here’s hoping it will improve very soon.
Hey everyone. I’ve got a question for those of you who are receiving or have ever received services from your state voc/rehab agency. Have you ever been denied orientation&mobility instruction based solely on the fact that you don’t have a good enough job, or any job at all? Well, this is exactly what happened to me. I will leave the details out because I think you know where I’m going with this one. But to put it bluntly, why did I have to deal with that crap? Why should any VR client for that matter—past, present, or future—have to deal with that crap? Now before I explain what I did to remedy this situation, I should point out that I re-registered for ADA paratransit service in my area and was found to be eligible, and I have started using it again. I am happy to report that paratransit service here in the Chicago area has greatly improved from what it used to be. In addition, I have friends, neighbors and co-workers here who have been wonderful about helping me out when I needed it. But here’s how I remedied the situation of not having any formal O&M instruction for quite awhile. One of my supervisors and I attended part of a 2-day conference a few years ago, and we went up to the Client Assistance Program table to speak with one of the representatives in attendance. We told the representative what had transpired, and a case was promptly opened for me. It took awhile, but an O&M instructor called and was finally sent out to work with me. However, we were only able to work together a few times. I can’t help but ask the following question: if my state’s paratransit folks were willing and able to improve their service and that service is state-run, then why not the VR agency? I realize we’re living in tough times these days, but the above situation honestly did not have to happen. I’m not mad at myself, nor am I mad at any of you. However, I am mad as heck at my state’s VR agency. I am never, ever going to use their services again, as long as I live and breathe. Even if something dire were to occur and I had no other choice, I am not dealing with them. It’s just not gonna happen! The only thing that will possibly make me change my mind and re-consider things, is if their services improve drastically. But otherwise, I’m steering clear of them. They discriminated against me when I asked them for help finding a job. This was done in kind of an indirect way, but still I had a very difficult time of it all. Then on top of that, I was told in no uncertain terms to get a good, paying job before an O&M instructor would be brought in.
Hello everybody. I’m writing this entry while listening to The Mosen Explosion on Mushroom FM. Check out my bookmarks for a link to this very awesome online radio station. I’d like to wish you all a most Happy St. Patrick’s Day. I’m not in the least bit Irish, but I am celebrating in a couple hours. My neighbor across the hall is co-hosting a St. Pat’s Day party in our building. I was at a work open house on Friday, and I had some very good Irish food. I’m not talking authentic Irish or anything of that nature, just green food. Actually I did partake in some delicious Irish soda bread and some 7-up. But as far as I know, 7-up isn’t Irish. But needless to say a good time was had by all. Anyway, I think that’s all for today.
Hey everyone. I hope this finds all of you well. It is Tuesday evening again, and I would normally be attending the Young Adult Program that I’ve been attending practically ever since its inception over 12 years ago. However, an email was sent out this afternoon by one of the guys who currently runs our program, and he said it was cancelled for this evening. This is due to the snowstorm that has befallen the Chicago area. If memory serves me correctly, this is one of only a couple of times that our program has been cancelled. I was talking with a sister this afternoon who also attends our program, and she reminded me that it was actually cancelled before as well during my hiatus from the program. Yes indeed folks, I took a hiatus from the program awhile back, but not because of something that went wrong. As a matter of fact, I really like this program and have had a lot of fun there over the past several years. But I took a hiatus due to the fact that nobody was available to drive me up there and back. But then my life-skills tutor and I re-discovered ADA paratransit. Actually I re-discovered it, and he discovered it for the first time down here. But that’s a topic for another entry. I think our program will be on for next week though. Actually now that I think about it, there was one other hiatus I took from the program several years ago, but that was for medical reasons.
Hi everybody! You probably thought I had fallen off the face of the planet, right? Well, perhaps those of you who haven’t seen me in person for the last several months, thought I had died and gone to that good ol’ place in the sky. Either that, or maybe I got hand-cuffed and carted off to Azkaban or something? Well, truth be told neither of those things actually happened. What did happen is that I took a hiatus from the System Access Mobile network for awhile. But not per my own choice. I don’t wish to detail the whole story, but in the middle of last year my parents began experiencing credit-card trouble and I was therefore booted off of here. But things finally got sorted out last week and I’m back. I’d like to thank my parents and Lisa from Serotek. I am re-vamping the site a bit, in part because Klango is no longer in development. For those who don’t know, Klango was the software I used for part of my site. But that’s okay I guess. Anyway, I would like to wish you all a very Happy New Year. I was unfortunately under the weather over the holidays but I’m on the mend. I haven’t fully decided what’s all going to be on my site, but there may not be as many blog entries.
Hey everyone. I hope you’re doing great and as always, staying out of trouble. Good! I’d like to start this entry off by wishing those who are currently observing it, a very happy and safe summer. I hope you’re not sweltering in the heat like I am. Actually, my apartment not only has fans, but it also has 2 very good window air conditioners. What I do is I only keep one running at a time to conserve energy. But let me tell ya folks, when they are running it feels absolutely wonderful in here.
The next thing I’d like to discuss is something which took place last week. That something is paratransit. I hadn’t used the service for several years, due to ongoing problems which would take me too long to detail so I won’t. Suffice it to say I was not a happy camper and therefore, didn’t want to use ADA paratransit. However, I must admit I had a change of heart. What exactly caused this change of heart you ask? Well, I had done some research online, and I also called and spoke with a few representatives in the paratransit division of the Regional Transit Authority here in Chi-town. I’m not sure I’m allowed to go public with the other reason so I won’t. But needless to say, last week was my first round trip and I did it with the help of a kind tutor who works with me. Both rides went quite well, and I’m pretty confident that this will be the case for future paratransit trips.
I think that’s all for now. Take care everybody and please don’t drink and drive.
I almost forgot to post my contact information so that people can get hold of me, perhaps send me some hate mail? No, don’t do that. If you do send me hate mail, I will read it but will most probably delete it straight away. Anyway, here’s how you can contact me if you want to. You may send me an email to either jajoehl@att.net or jjoehl@samobile.net . The second email address will accept voice messages in addition to the text-based ones that most people are accustomed to sending. I am also on 2 of the social networks. You may follow @jajoehl74 on Twitter. That’s the one I mainly use, but I’ve recently been on Facebook more and more since it is becoming more accessible for us screen reader users.
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