Skip to Content

Maybe I Should Quit My Job and Go on The Dole!

February 23, 2007 • Darrell Shandrow Hilliker

Ever since I learned I would need corneal transplant and retinal repair surgery on my right eye, I have been trying to find a way to obtain the post-surgical care I know I will need. Now, I’m quite self-sufficient, and am able to handle about 80 percent of these needs on my own. For instance, I have been taking eye drops safely for many years. The need to take such drops every two hours during the day will thus not present a significant issue for me. The major area where I will need help is the administration of ointment to my eye, which has proven not to be such a safe proposition in my case. There are two concerns with ointment. First, there is a significant danger of my touching the tip of the tube to the cornea. Second, even if I manage to avoid the first pitfall, there is the concern that the ointment tends to go many other places than the cornea’s surface where it belongs.

For the past week and a half or so, Karen and I have been making telephone calls in an attempt to obtain some assistance two or three times a day (for probably 5 to 10 minutes each time) to administer ointment and help correctly patch the eye in the evening. Here are all the obstacles we have encountered:

  1. Insurance doesn’t cover the hiring of a home health aid or nurse as they do not consider these surgical procedures to require such care. If I had a serious head injury or a serious injury to my arms or legs, then, yes, they would cover home health, occupational therapy, physical therapy and any other necessary follow up care. The recommendation is to get help from a friend, relative or volunteer agency of some sort.
  2. My nearest relative is my mom, who lives approximately 50 miles away. All of Karen’s relatives live on the East Coast.
  3. We don’t have a deep enough pool of local sighted friends from which to be certain of obtaining consistent help. I may get this help once in awhile, but that’s insufficient for this level of severity, where rejection of the cornea transplant is highly likely.
  4. Organizations providing services to the blind here in the Phoenix area, including the Foundation for Blind Children and the Arizona Center for the Blind and Visually Impaired, “don’t do this” and are unable to offer any serious recommendations of how I may obtain the help I need. If anyone could help me, I expected much better from these kinds of organizations.
  5. Similarly, other organizations for people with disabilities, such as the Arizona Bridge to Independent Living, don’t offer a program or service that covers my needs. The lady I spoke with at ABIL is at least willing to help me find the help, so, maybe that will ultimately be productive.
  6. I contacted the College of Nursing at our local university, Arizona State University. An announcement has been posted to all students and staff on a bulletin board asking for anyone interested in helping to give me a telephone call directly. After almost an entire week, there hasn’t been one call!
  7. Calls have also been placed to some local Lions Clubs and other similar service organizations, for which I am awaiting returned telephone calls.

If I were on AHCCS (our state’s implementation of MedicAid), Medicare, Social Security, Vocational Rehabilitation and all the associated welfare related programs and services, the person at the Arizona Center for the Blind said I would quite likely have no trouble at all getting the help I need. How messed up is that? It is disgusting that I do my best as a good citizen, working an honest day’s work, making money and being self-sufficient, yet I get rewarded by not receiving the help I legitimately need in order to save what little eye sight remains in my only functioning eye! I’m not even asking for a freebie! I’m even willing to make reasonable arrangements for compensation, but that’s apparently not even good enough!

Thank goodness for Jeff and Keri, who are willing to help me out in the beginning. I’ll be down there in Tucson for a week or so. Though I telecommute on my job, I really need to get myself back here as soon as possible. I’ll need to get back home. I shouldn’t have to stay more than a hundred miles away from home in order to get this basic help!

Though I’m not really serious about this, a part of me feels that, maybe, Karen and I should just both quit our jobs, get Section 8 housing, go on Social Security, get AHCCS, Vocational Rehabilitation and all the other trappings of the disabled person on welfare. At least, then, so I am told, I’ll get what I need! Again, how totally messed up is this! Anyone else out here have any brighter ideas? They’d be very much appreciated!

Categories: Uncategorized

Retinal Detachment

February 17, 2007 • Darrell Shandrow Hilliker

Hey everyone. We know it has been quite some time since we’ve done a podcast. So, here’s show #129. We were having dinner at Outback in celebration of Karen’s upcoming birthday and chatting about what’s new. As the title suggests, I learned that I have a detached retina in addition to all my other eye related issues. A cornea transplant combined with retinal surgery is scheduled for Feb. 26!

Download and Listen

Categories: podcast

ConeXware, Inc Moves to Take PowerArchiver Away from Blind and Visually Impaired Customers

February 11, 2007 • Darrell Shandrow Hilliker

It has been brought to our attention that public betas of PowerArchiver 2007 are no longer accessible to blind and visually impaired users. Repeated attempts to reach the company’s sales and technical support teams concerning the issue have been persistently ignored. This improper state of affairs should be considered as an indication of how the company will treat all its customers from a customer service and support perspective. We ask that everyone, blind or sighted alike, cease doing business with ConeXware, Inc for any reason, until company representatives make the decision to resume dealing effectively with all customers. We ask that all current customers contact the company’s sales and support teams to express concerns about the inaccessibility of the upcoming PowerArchiver 2007 as well as the disturbing trend of totally ignoring blind and visually impaired people. At this time, we recommend use of the free, open source 7-Zip utility for your file compression needs.

Categories: Uncategorized

NosillaCast Covers Accessible Currency Petition

February 9, 2007 • Darrell Shandrow Hilliker

I’d like to take this time to express my wholehearted thanks to Allison for signing and spreading the good word about the Money for All Accessible Currency Petition on show #81 of her NosillaCast podcast. Allison and I met in November 2005 at the Portable Media Expo and Podcasting Conference. Besides just being good people, she also helped me make a number of great contacts at that event. I’m looking forward to our hanging out for a couple of hours again this year while I’m in L.A. for the CSUN conference.

Categories: Uncategorized

Opportunity to Encourage Development of Accessible XM Radio Receivers

February 9, 2007 • Darrell Shandrow Hilliker

Here’s our opportunity to encourage the development of accessible XM Satellite Radio Receivers. Ralph Stewart of My Radio Store has positive contact with an XM Radio engineer who may be interested in the development of receivers that are more usable by blind and visually impaired customers. An accessible receiver would enable us to utilize all its features and functions as well as hear important information such as the displayed artist and title for the currently playing song. Receivers that are accessible to the blind and visually impaired can also help drivers keep their eyes focused on the road while they listen to XM Radio programs. Please write to Mr. Stewart by sending an e-mail to ralphs (at) expressing your interest in an accessible XM Satellite Radio Receiver.

Categories: Uncategorized