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How I Live With a Disability

I’m the only blind person in my family. There was a lot to learn about.

Photo by Thomas Lefebvre on Unsplash. Photo of a Still Man in Grand Center Station While Others Move Around Him

Hello folks, welcome to another article here on Vocal. It's been awhile for me. I last wrote in March with a great article talking about driving which got a nice award for it being on the front page on Vocal’s site in the appropriate category. Today, I want to take a different approach to an article and talk about living with a disability and what was done to support me both in the technology side, as well as life in general.

I was born into a world with two sighted parents. I’m the only blind person in my family. There was a lot to learn about. The family had to learn about what I could see or couldn’t see for that matter, as well as how to make it possible for me to read.

It took a while to speak, and other things were done to make me understand what was around me. I don’t remember much more than that, but it did take me awhile.

Schooling was tough. Family had to help me a lot, especially when the stuff I was working on was not accessible for me. All of my family had a hand in the beginning, including one family member learning braille so they could help me with it.

One person who really did a lot for me sadly isn’t here anymore. He left this world on April 19, 2018 at the age of 65.

Technology back in the day was not easy to get. Computers were probably more expensive than they are now, although the one I’m on now cost Dad $1800 from what I was told, but he always tried to give me the best he could find. This computer allows me to do podcasting and other things that I enjoy doing which includes article writing as well.

Back in the day, dad ended up buying different types of equipment for me. Speech was not software based as it was now. It was hardware based. The Sounding Board, as it was known, was a board that went into the PC. He also taught a DecTalk PC, and a DecTalk Express. The express I still have today, but I don’t use it. The way you used a computer back then was a lot different than we do today.

Back in the day, we learned in an environment called DOS. For those who aren’t familiar with it, it was mainly command driven, and the commands ranged from making directories to typing in word processors.

Today, Dos is used in a window similar to the one pictured above. You type commands that are instructed to you depending on what you want to do. For example, if you wanted to ping my web site to see if it was up, for any reason, you’d type ping jaredrimer.net at the prompt as shown below.

You see that the website is responding, and it takes 4 responses to determine a good connection to the site. There could be errors given in the form of timeouts, and it’ll tell you that. Back when I grew up, we used the same Dos to get on the internet as we only had dial-up. My dad let me get on the net using his name as one of the email addresses. As I grew up, I was able to get my own name with my own email address when moving to the different operating systems.

Screen Reader usage: part 1 talks about the first screen reader that I first used. It started of course in Dos, but I had the same technology in place when using the Windows operating system minus the sounding board.

In part 2 and part 3 of the same screen reader series, I talk about how eventually we moved to software speech where we are today. My father bought me all of the screen readers mentioned in these articles. You can learn more about the basics of how these readers work by clicking through to each article, or feel free to contact me through my website to ask questions. I invite your questions or comments.

As the years grew, Dad had to take over as part of my whole life, so job searching and other aspects of my life needed more work. He even helped me through the end of schooling by giving me rides to places where I could get help with my school work.

Today, job searching has become difficult. How can we get jobs when we can't see came into play after numerous job searches and the fact I still have no job still. He even helped me format my resume although nowadays, I have had the assistance of a job developer. Dad has made it possible for me to compete in the workplace, since I’ve learned a lot of my computer experience on my own, with no books or formal training.

I’m proud of what he was able to accomplish for me, and when he eventually got sick, I tried my hardest to get a job so he knew I could support myself. I vowed before he went that I would have a job, and it has not come to pass.

One thing he didn’t really support was my White Cane Travel project I started. I thought this could really be a business opportunity for me, because searching for the various resources that are listed on the site became a chore. I’ve written various articles here on Vocal about my experience and how I was taught how to travel.

All of these articles in the series has something you can take out of, and I’ve been proud to write each and every one. I was trying to get donations for advertising and Dad said I needed to get rid of it. Even when I asked a family member if they wanted to donate to the project since they were going to give money to me anyway, and Dad said no. I started the project for a reason, and the project will stay. I think it has a purpose, and I’d love to get the project out there to the sighted, where it is badly needed.

He asked me what it was, I explained, and he said that the agency I started the project for should pay for it. While I see his point, I already know that the agency I built it for won’t do it due to logistics and other reasons.

I’m proud of Vocal for finding me, and there could be other opportunities for writing elsewhere around the web, and I have made some money with all of these articles, and that I’m proud of. I don’t know if Dad has ever read my articles, and I feel that this is the hardest one to write.

I’ve always tried to do the best I can, and it's time to say goodbye to you. It was a fun ride. Below, I’d like to share the letter I wrote to him in its entirety. Please feel free to contact me through my web site and I appreciate the support.

Remember to check out the linked articles to learn. That's what White Cane Travel is about. It's not about the money.  

_____________________________________________________________________________

Dear Dad,

I know it has been a hard road, bringing up a son who is visually impaired. I know you really tried to do the best you can, both with getting the equipment I needed, to helping find me a job. Sadly, finding me a job is hard, and I have been trying my best with the skills I have to get that job, even though there are challenges.

The time has come to where you can’t help anymore. I’ll continue to run your sites as long as it can be run. I learned how to code on my own, although I was willing to change your sites per your request. I would have been happy to do so, but I didn’t know what you wanted on them. I wonder how someone is to run a site and make changes when they don’t know what you want on it? I had asked, but you didn’t tell me what you wanted, and you asked someone else to do it. I would’ve done it if I knew what exactly you wanted on each page. I can’t read your mind.

I just want to take this opportunity to thank you for everything you have done for me. I know that after Mom left, you bent over backwards for me to try and help me. You’ve tried to apply to many different jobs for me, and I’ve also applied and gone on many interviews through the years.

While I took the workforce readiness class that was required by going to Tierra and passing it, it's not lead me any closer to a job. I got the lead for Spectrum, and felt I did a great job in that interview although they said that they wouldn’t select me to move forward because they were unsure how I could do the job. I explained what the software you bought for me does, and offered to show them should I be selected to continue with the company.

Today’s internet is not the same as you and I grew up using it. You’ve been on the internet a very long time, and I appreciate the fact you let me use the address belonging to your name until we moved to Windows.

From the DOS software, to the Windows software, and even the OCR software and scanners, you’ve really done your best to equip me for a future of independence. You and I have spent many hours working on making the software work for me, teaching each other what it can do, and even allowing me to take a course that ended up getting cancelled anyhow although I was still able to go and take a course for free. That was a fun experience, and one I won’t forget. I ended up taking the train on my own to one course, and took access to take another one.

You brought two screen readers for me, one a daily reader, the other used for music. I don’t really know why I grew tired of the music, but now I’m using that reader, while the other closed in 2017.

One of the screen readers was used with my work with SCCM. I appreciated the fact that I learned JFW, the screen reader, with the program CakeWalk so I could make my own music. I know you wanted me to continue it, but I just got bored, only recently, getting interested in the piano a little bit to dabble while dealing with the end of life that you had.

It was very nice that I was able to get Richard down here to visit you before it was too late. Tuesday was the perfect day, as Wednesday was the coming of the end although we did not know it at the time. We really wished that you could have continued the fight so that we can continue to find a cure for different kinds of cancer, but this was memorable to have Richard come to see you although the others never made it.

Getting back to the screen readers, I also got into another screen reader which you weren’t introduced to. The screen reader is called NVDA. It's similar to Jaws, and I wish I could show you how it works. The screen reader is free, with optional donations. I’ve used it recently to do some work that VEDC asked me to do for their website to make sure it worked with the access technology, as this company hands out loans to small businesses for their needs. I wrote a report and sent it to them while I was there with that piece of software. It worked out well. Too bad it wasn’t around when you bought my computer way back when, but I have it now for when I’m on the road. Jaws, the current screen reader, does not have a portable version anymore. The last version was 15, but I do not think it is compatible with the current operating systems that we have today.

In other things, I really wish I had the courage to tell you what Mom was doing to us kids, more importantly, me. While there were good qualities, I know that at that time, it wasn’t feasible for you to do everything because of your long commute to work from where we used to live. I know it must have been hard learning about what Mom did to us, but I know that she left for other reasons, none of which is important right now. What is important is that you were happy, and when it was time, you made the decision that was best for you. I am proud of the fact you made the decision when it was best for you.

After Mom left, you were patient in helping me get to where I am today. Teaching me things I tried to get, to even understanding the things I could improve, this was the quality I could get behind with you. Even if you got mad at me, you never raised your voice like Mom did, and if you did, you never laid a hand on me like Mom did. That, I’m happy about. It makes me proud.

Seeing you suffer makes me sad. It reminds me of Papa too much. The family is trying to make it safe for me, but it just feels too much. I am trying to spend time with you before you go, whenever that may be, but I’m finding it difficult because my senses do not like the sounds. I’m trying my best to ignore the sense and come in as much as I can before it's too late, but I’m finding it difficult. If only I didn’t have the sense, maybe it would be easier for me. It seems like alcohol helps, but I’m not using that to help me cope with the fact you’re dying.

I was hoping that the treatment you were getting was helping with killing the cancer, allowing your body to fight the disease, and you’d be back to normal. It pains me to know that the urging of us to get you to quit smoking came to this.

I am proud that at times where it was not appropriate to smoke, you did not smoke. I don’t know when that would have been, but in the end, you did quit in 2016 for good and I praised you for that. I was so happy to see you not smoke anymore, that I was hoping that things would be fine now for years.

During my DARE class, I vowed not to smoke or drink, but I do have a drink on weekends, and I definitely know when it is enough. During this time, I’ve felt at times that I’ve had a little bit too much, but I don’t think I overdid it. I always felt fine the next day, and I did feel more relaxed.

I’m hoping that at the times you’ve had drinks, you did it to relax, not more to get drunk. I guess occasionally, you got drunk. However, I don’t remember these episodes, but know that you will never see me drunk like that.

As you pass, my sense tells me that you are at peace. I felt this sense for a week before you went from the time you got home from the hospital to the time I went to sleep the night before you passed. I don’t feel it anymore. My sense is relaxed now. I wish I could explain what this is, but I am not really sure about what this sense is and why I even have it. I’m hopeful now that it will be quiet for awhile so I can continue to do the work we need to do after your passing.

May you now rest in peace. It was hard for me to tell you that you needed to sleep, I’ve tried to tell you that for a long time, but you finally went to sleep more on a permanent basis.

The family and I will miss you. Sleep well, you’ve earned it.

Sincerely,

Jared

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