Photo of a raging physician

Today is my eight-year “anniversary” of my Retinitis Pigmentosa diagnosis.

“I am discussing confidential patient files in there and it is NOT okay for you to barge in. You don’t come through a door you didn’t come through!”

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From BBC Ouch: Training to use a guide dog isn’t always a walk in the park.

This is a great podcast discussing the pros and cons to owning a guide dog. It is a HUGE decision that should be made after much research and making sure a guide dog is a good fit for both you, your family/loved ones and the animal.

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Pfizer: U.S. Expect Covid-19 Vaccine in June or July 2021

This December 8, 2020 Washinton Post article states Trump administration officials deny there will be availability issues, but others say problems are possible in the second quarter. “Pfizer, partnering with BioNTech, and Moderna have created promising vaccines that scientists hope will lead to more medical breakthroughs using mRNA. (Joshua Carroll, Brian Monroe/The Washington Post)”

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Photo of woman with blonde hair and orange blouse sitting in front of screen magnifier

Abandonment of Assistive Technology?

people with disabilities such as cognitive, physial, visual, auditory, motor and sensory impairments use the assistive devices they have. The takeaway for me after reading this was that if a technology is not user-friendly, tons of money goes to waste.

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Clip Art of Lady with Black Hair Looking Through a Large Magnifier

Accessibility: Can We Outlaw Grey Text on White Background?

Accessibility seems to be the “cause de jour” in the tech world these days with tech giants like Facebook, Google and Microsoft pledging their commitment to Accessibility (making the internet more user-friendly for people with disabilities). As a visually impaired user and founder of a website created for the sole purpose of supporting those with visual impairments (LowVisionSupportGroup.com), I am hopeful and grateful that this issue has received so much attention. I do not want to rain on Facebook, Google nor Microsoft accessibility parade, but I urge anyone who wants to make the web more accessible to those with visual impairments take a step back and do some very simple fixes to their sites first. The first thing that could be done is to do away with grey or silver text on a white background. For people like me with visual impairments that impact our ability to see color, grey or silver text on a white background can make a site virtually useless. This seems like a very simple fix so I do not understand why grey or silver text on white seems to be the default color scheme of so many sites.

“Accessibility Teams” issuing glossy press releases touting their commitment to making the web more accessible. However, I feel like we are putting the cart before the horse, so to speak.

Features like voice over and designing sites to be more screen-reader friendly are all admirable and badly needed features for people like me who are losing their vision.

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photo of blind student with white cane being shown orientation and mobility.

Ask Don’t Grab

I had a disturbing encounter today. My caregiver dropped me at the hospital curb for Physical therapy and as I was walking through an automatic door I’ve walked through a million times, I felt someone gently grabbing my arms from behind at the same time I heard a male voice saying “you’re okay….just go a little to the left”. It really startled me and I tried to see where the voice was coming from, but the man was totally out of my field of vision. I guess to him, it looked like I was going to walk into the wall, but I wasn’t. I was mostly just trying to get through the large automated sliding door without hitting anyone with my cane. The man continued to hold onto my arms and “helped” me until I got to the elevator. It was very odd as I know he meant well, but grabbing me from slightly behind me scared the beggeezes out of me as it made me realize how vulnerable I am. It also strikes me how little people understand about the degrees of visual impairment and how much work we must do in order to educate the general public on how to interact with people with visual impairments. But how do we communicate this?

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Photo of a raging physician

When your doctor is scarier than learning you are going blind.

Excerpts from visits with Dr. Schwartz :
*12-17-12:” I don’t know if you’ll remain sighted”.

*2-21-13:
“In my professional opinion, you will probably never be totally blind”.

*Dr. Schwartz screamed at my mom: “Ma’am, when you ask me a question and I expect you to pay attention to me while I answer it. You come here, you berate my staff and now you’re ignoring me when I talk!”

“”Your vision was a little worse than the previous visit.”

*”You are probably at the end of a phase of fast progression and will enter the last phase and your vision will stay the same.”

*“DOCTOR TO NURSE!!! “Your crying is DISPROPORTIONATE to your condition!”

–Steven Daniel Schwartz, MD

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cartoon of a raging bull

Jules Stein Eye Institute Continues to allow the Retina Division Chief to Verbally Assaults Patients Going Blind.

“I am discussing confidential patient files in there and it is NOT okay for you to barge in. You don’t come through a door you didn’t come through!”

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stock photo of woman lying on a gurney having an ERG test to diagnose retinitis pigmentosa.

UCLA Jules Stein: ERG (day two) and CT

I had my umpteenth visual field test and as usual, feel like I didn’t do so hot but at least it
is not as grueling as the ERG. McGee’s doctor scheduled her to return 12/20 and
once again, I won’t be there for my daughter as I will be in the hospital after
my left shoulder replacement.

Day 2 of the ERG was not as grueling;
there was no light adaptation
required so that helped. Sara, the tech, is awesome
and makes it much less scary. I was able to listen to my audiobook so that helped tremendously to make the time go by faster.

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UCLA Jules Stein: ERG Testing Day One

TBGirl BLOG POST TITLE: UCLA Jules Stein: My First Visit DATE WRITTEN: 11-26-2012 DATE POSTED: DATE BACK POSTED: 11-26-2012 NOTES/COMMENTS:…

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