Tuesday, December 3, 2013

#TEDTalkTuesday Chris Downey: Design with the blind in mind

Haven't done a TED Talk Tuesday in a while but I'm back with a good one. Today (December 3rd) is International Day of Persons with Disabilities. This year's theme is "Break Barriers, Open Doors: for an inclusive society and development for all”. I found this great talk that I feel embodies this year's theme perfectly.

Tuesday, November 26, 2013

Just In Time For the Holidays: Braille Greeting Cards

The above picture is an assortment of Braille Tactile Holiday Greeting cards.

So the other day one of my Stargardt's twitter friends Yvonne Felix tweeted me the above picture of greeting cards. These are not just any greeting cards they are Braille tactile cards. Yvonne was tired of getting cards that she couldn't see so since she's an artist she decided to make her own. This is such a great idea. The proceeds from the cards will go to support the non-profit Resight Inclusive Arts.

The cards are $3.00 or $25.00 for 40 cards you can purchase the cards here.

If you liked this post you maybe interested in reading: 
Artist Yvonne Felix Thriving With Stargardt's

Sunday, November 24, 2013

Saying Hi and Stargardts Links

I'm saying hello via the below video I made but I just realized that some countries don't allow video playback. Basically what I'm saying is I know that on this blog I can be inconsistent when I post and I've drifted away from telling my story dealing with vision loss. Below the video I provided links to websites, blogs, a video playlist and more to help you connect with others who have Stargardt's. If you know of some information I missed feel free to contact me. If you are able to watch my video I made it closed captioned so you can understand me better.

Tuesday, October 29, 2013

#TEDTalkTuesday - Vampires: Folklore, fantasy and fact - Michael Molina

I'm switching it up a bit with my TED Talk Tuesday post and featuring a video from the education branch of the TED organization. This year I've been more enthusiastic about celebrating Halloween since last year being unable to due so because of Hurricane Sandy.

Tuesday, October 15, 2013

TEDTalkTuesday - Julian Baggini: Being Multifokal

Finally back with a new TED Talk. The title of this blog is The Ever Changing Perspective of Essceejulies. The word in that title that jumps out should be perspective. The use of the word perspective isn't just used to describe the physical sense of sight but how perspective shapes how we see with our inner-vision. Perspective molds so much of how we navigate through life. It shapes who we think we are and how we interact with others.

Tuesday, October 1, 2013

#TEDTalkTuesday Roundup Video Playlist

Its Tuesday so its time for a TED Talk but I'm not featuring one talk but instead a playlist. The TED talk posts have been the life-preservers for this blog. I've criticized myself in the past for letting the posts become the only content I would feature for a while on the blog but they aren't a complete waste.

Wednesday, September 25, 2013

My VEDA Experience #SSSVEDA

Last month I participated in VEDA or Vlog Everyday In August. A vlog is a portmanteau of the words "video" and "blog". I flirted with the idea of vlogging or making videos on Youtube since 2007 (before I was diagnosed with Stargardt's). I've always enjoyed the creative content the site has to offer. Yes, its more than cat videos! Its also been amazing to see so many of the creators develop their brands and others sharing their lives over the years.

Tuesday, September 3, 2013

September Is...National Guide Dog Month

A blog post that isn't a TED Talk? *sarcasm* Well the answer is yes and its a "This Month Is..." post. This lovely month of September happens to be

Tuesday, August 20, 2013

TED Talk Tuesday: Ron McCallum - How To Read When You Are Blind?

Its Tuesday, so that means another TED Talk and this week the featured speaker is visually impaired. I know I should of featured more videos like this sooner.

Tuesday, August 6, 2013

TED Talk Tuesday: Lissa Rankin, MD - Can We Heal Ourselves?

I'm starting to think do I work for the TED organization and don't know it yet? Hmmm... I wonder myself at times. *smiles* Its Tuesday so that means another Ted Talk. This week's presentation is from the TEDx American Riviera event and features physician Lissa Rankin.

Dr. Rankin takes a holistic approach to what makes people ill and what makes us well. In her TED Talk below she discusses how we may have the ability to heal ourselves with our minds. She cites the phenomenons of the placebo effect and the nocebo effect. She also looks at how our mentality towards life and our lifestyles can affect our health. I wonder though if the placebo and nocebo effects take place in all health cases. For instance if a patient has strong positive belief and doesn't get better or vice versa, just a thought.

She doesn't say that physicians and healthcare workers are no longer needed but may need to reevaluate how they treat patients. Patients should also remember that their healthcare is a collaborative effort between themselves and their care providers.


Check out Dr. Rankin's latest book:

Mind Over Medicine: Scientific Proof That You Can Heal

If you liked this, you may like the following: 

TED Talk Tuesday: Chen Lizra - Seduction In Our Everyday lives

TED Talk Tuesday: Brene Brown - The Power of Vulnerability

Turning Your Can'ts into Cans: Being a Visually Impaired Parent

Monday, August 5, 2013

Kim Nguyen: Varying Degrees of Visual Impairment

Since I've been a part of the visually impaired community for less than 16 months I'm still learning a lot. Its sort of like a baby learning how to walk, still a little awkward in their gait. At times its difficult to explain what's going on because I just don't have the experiences or the confidence to explain what I see. Sometimes navigating through the feelings involved when dealing with vision loss is more difficult than actually confronting the impairment. Imagine my excitement when I came across the youtube channel of 19 year-old Kim Nguyen. 

Tuesday, July 30, 2013

July Update

Sorry no TED Talk today sometimes you can have too much of a good thing. I've been using the TED Talk posts as fillers on this blog. Its been long overdue that I start writing more substantive posts; especially more about my journey with Stargardt's.

I feel like I have a better understanding about living with Stargardt's and have clarity to move forward. So there's lots of great things coming soon.

Like this post, you might like:

TED Talk Tuesday: Dr Robert Lanza - Cloning, Stem Cells & Regenerating Life

TED Talk Tuesday: Chen Lizra - Seduction In Our Everyday lives

Turning Your Can'ts into Cans: Being a Visually Impaired Parent

Tuesday, June 18, 2013

TED Talk Tuesday: Brene Brown - The Power of Vulnerability

It's Tuesday.. so its time for another TED Talk. Have you ever come across something in your life either it be a book, a song, a person or set of circumstances that just resonate with you? Well the below TED Talk which features social researcher Brene Brown Ph.D definitely resonates with me.

Tuesday, June 11, 2013

TED Talk Tuesday: Dr Robert Lanza - Cloning, Stem Cells & Regenerating Life

This week's TED Talk is from the TEDXDeExtinction conference held back in March and features Dr. Robert Lanza. I first heard about Dr. Lanza when I was diagnosed with Stargardt's Disease last April. Dr. Lanza is the Chief Scientific Officer for Ocata Therapeutics which is a U.S. Biotech company that is currently conducting a clinical trial involving Age Related Macular Degeneration and Stargardt's.
The trial is testing for the safe use of human embryonic stem cells in the regeneration of damaged cells in the eye. The company has been in the news lately for some encouraging developments in the trial. I wrote more about it in further detail here:

Clinical Trials: Ocata Therapeutics (ACT) - Stem Cell Therapy

You may be curious about the correlation between regenerative medicine and extinct animals. The same technology that is being developed to possibly restore the vision of others and myself, may also bring back animals who have been long gone. Well not too long gone, you won't be able to have a pet T-Rex or read headlines like "A Pterodactyl Stole My Baby!!!" In my personal opinion that would be cool but I guess I have to stick with going to Universal Studios in Orlando to go to Jurassic Park which isn't all that bad.

Getting back to Dr. Lanza  his life story is particularly interesting. To be perfectly honest last year when I was diagnosed I was just happy to know that there were people out in the world working on a treatment or cure. It wasn't until a few months ago connecting with more people with Stargardt's is where I started to hear his name and genius in the same sentence. Genius is a hefty word but how many people in their teens are genetically altering chickens to turn them from white to black?  The closest thing to genetic engineering I got to in my teens was playing The Sims, playing a more obscure PC game called Creatures and having a Gigapet. (Yes I'm a child of the 90s aka a Millennial)  Also, how many people can say they were mentored by Jonas Salk (discovered the polio vaccine), famed psychologist B.F. Skinner and Christiaan Barnard who performed the first successful heart transplant surgery. I'll stop listing his achievements before this post turns into a novel.
If you would like to learn more about Dr. Lanza check out his website here. I'm done for now so watch the video below and share your thoughts.


Wednesday, June 5, 2013

June Is...

Clouds and Blue Sky | Photo Credit
Essceejulies/Sharina Julien | If you would like to use
this picture please contact me or give proper attribution 
Its the beginning of the month and  that means I'm spreading awareness. So what's in store for this month installment? Something about 3D baby audiobooks, research, vision, smiles and Pina Coladas. That doesn't sound right... read more to find out what I'm exactly discussing this month. 

Tuesday, June 4, 2013

TED Talk Tuesday: Chen Lizra - Seduction In Our Everyday lives

I took a bit of a mini-break from the blog but I'm back with this week's featured TED Talk... you know the organization that spreads ideas worth spreading (that I'm in L-O-V-E with). I wanted to switch up this week's talk and feature something a little lighter. 

The below video is from
a TEDx Vancouver event featuring creative marketing consultant Chen Lizra who discusses the powerful tool of seduction in our everyday lives. This talk is provocative in that Ms. Lizra uses the sexual connotation of the word 'seduction' to illustrate that seduction can be more than a device for temptation. Some people watching this video may not take it that way and never get pass the surface to see that the talk is really about self-confidence, passion and drive to live one's life and fulfill their dreams. Well that's what I took away from the talk. 
What I enjoy about the TED Talks is it gives the world a forum to talk about ideas in a different way that provoke deeper discussions. Like I said in my first TED-centric post A Different Perspective on: Introverts being presented with new ideas can be a catalyst to self-evaluation. An evaluation that makes us think differently about who we are and the world we live in the only difference is how will you react?

If you are interested in more perspectives in seduction you might want to check out Ms. Lizra's book My Seductive Cuba where much of the inspiration for her TED Talk comes from. I'll definitely say she 'seduced' me to think more inspiredly about my personal potential.

Thursday, May 9, 2013

Turning Your Can'ts into Cans: Being a Visually Impaired Parent

When I was initially diagnosed with Stargardt's I said I felt like my future was eroding away from me. Now looking back my future wasn't eroding away from me as much as it had changed from what I thought it would be.

Tuesday, May 7, 2013

TED Talk Tuesday: Dr. Oliver Sacks - Hallucinations & Our Minds

I've mentioned before that I enjoy watching the presentations held by the TED organization. For more info about the TED organization check out my previous post featuring author Susan Cain A Different Perspective on: Introverts. There are so many interesting TEDtalks that every Tuesday I'll post one up that interests me.

Since May is Mental Health Awareness month I thought

Thursday, May 2, 2013

May Is...

So its the beginning of  a new month, May to be exact and its time to inform you what May exactly is. Yes I know its the fifth month in the Gregorian calendar but there are a ton of awareness campaigns going on. In previous posts it was fairly easy to navigate through the awareness campaigns of each corresponding month but May has campaigns for days I mean literally 31 days to be exact. There are some really great campaigns and then some are just straight-up bizarre like National Hamburger Month, really? I shouldn't judge... to each their own... but really a whole month for ground meat? *smiles*

Wednesday, May 1, 2013

The REAL Adventures of Helen Keller

The above image reads in bold black print 'The Adventures of Helen Keller" and beneath this heading there are four black rectangles arranged in a square two by two grid. I personally deem the above image a "F-A-I-L".

Monday, April 15, 2013

A Step in the Right Direction: Braille Burgers

I'm all for when companies strive for inclusion. The mentality is to provide the best experience for each of their customers no matter their circumstance. These altruistic goals should be celebrated but sometimes the execution of them aren't up to par. I'm testing out a new series of post entitled A Step In The Right Direction which will showcase the inclusion efforts of companies and how they can improve upon them.

Wednesday, April 10, 2013

Driving With Low Vision

The feeling of lost independence is a common experience among people dealing with vision loss. Many of us take for granted the privilege of driving until we no longer have the ability to do so. For many people who do not live in urban areas with mass transit having access to a car and the privilege to drive can make life difficult. Driving influences so many aspects of modern life. It lets us decide where we live, where we work and so much more. So think about what this experience must feel like for those of us dealing with vision loss.

There are several low vision specialists who actually want to give some of this sense of independence back to people with low vision. Many people with low vision have difficulty with their central vision. Our central vision only makes up about 3 to 5 percent of our overall visual field. In driving situations we mostly use our peripheral vision. Central vision allows us to see details like reading road signs and peripheral vision allows us to see bigger details.

Bioptic glasses picks up the slack for central vision loss while driving. The glasses help bring into greater detail road signs, traffic lights and other driving situations that need to be brought into detail. The Low Vision Centers of Indiana has the most comprehensive resource on Bioptic Driving in the US and maybe even the world. (website link below) The video above produced by the company gives a general introduction to Bioptic Driving.

More Information on Bioptic Driving:

Low Vision Centers of Indiana  - This website is a comprehensive resource for information on bioptic driving.

State Driving Laws - See if your state has laws regarding bioptic driving.


Driving With Stargardt's Disease - This is a post from the Low Vision Help blog written by low vision specialist Dr. Armstrong who is based in Virginia.

Tuesday, April 9, 2013

April Is...

Photo Credit: Essceejulies
So my fascination with awareness campaigns
continues into the month of April which actually has the least campaigns... well according to About.com. Like I've stated previously in other posts about awareness campaigns they are great as a mass educational tool but should be looked at as a first step in helping to improve society.  

Below I highlight a few awareness campaigns that are being observed this month and their relationship to the visually impaired.

Monday, April 8, 2013

TED Talk - Dr. Francis Collins: We need better drugs

If you're a regular follower (why aren't you?) of the blog you might remember a post entitled A Different Perspective On: Introverts where I sang the praises of the TED Talks. Read the post to find out more. Basically the TED organization motto is "sharing ideas worth spreading." So I came across the above video of a talk featuring Dr. Francis Collins who is  a physician and geneticist. In the video he discusses the need to have better drugs to treat diseases especially rare ones like Stargardt's. There are over 4000 recognized diseases but only drug treatments for 250 of them. Dr. Collins theorizes that if drugs could be redesigned they can treat diseases more effectively. I personally think this is a great first step in improving people's lives as we continue on the path to cures. He also calls for the need for various stakeholders including doctors, scientists, investors and most importantly patients to work together. It's refreshing to hear that there are those individuals and groups in the medical and scientific community who are thinking progressively about solving problems. This is why I love the TED organization because it offers different perspectives to contemplate.

For a transcript of the video click the read more link below.

Monday, April 1, 2013

Teachers of the Visually Impaired Get Schooled

In the above video Ed Summers who is a visually impaired Software Accessibility Specialist at SAS Institute and Diane Brauner a Certified Orientation & Mobility Specialist conduct a workshop with teachers. These teachers work with visually impaired students and are being taught how to use the accessibility features of the Apple iPad to better serve their students. Ed himself who is visually impaired has made it one of his goals to make sure that the visually impaired have every chance to succeed in the world that is heavily being shaped by our technology usage.

Ed and Diane also wrote a brief manual on using the voiceover with Apple ios software here.

(Video Source: BloombergTV)

Friday, March 15, 2013

Artist Yvonne Felix Thriving With Stargardt's

 Photo 1 Attribution: Yvonne Felix Arts | website: http://www.yvonnefelixartwork.com/

It seems that I keep on finding people with Stargardt's who are some how involved in the arts. Well the trend continues with artist Yvonne Felix who I met via Twitter.
Yvonne is a Canadian public and community artist, an educator, an advocate, wife and a mother of two. Oh and she also has Stargardt's Disease which hasn't stopped her from pursuing her goals. 

eSight Eyewear for Low Vision

The above video is from the AMI (Accessibility Media Incorporated) documentary A Whole New Light and features the ALIVIOS eSight Eyeware glasses.
The video features Julia Lewis who is an executive with Stargardt's Disease. She's visiting with a low vision specialist who is showing her how to use the device.
The eye-ware looks like a pair of goggles but there more than that. They have a camera embedded in them that processes images that can be tailored to the specific needs of their users. In the video Julia is shown a picture of members of her family that are brought into focus for her. With the nature of low-vision its difficult for people to make out details such as those of people's faces.
The Ottawa Citizen wrote an article of another patient Yvonne Felix using the AVILOS eye-ware device. She was able to make out the faces of her two children using the device and even was able to complain about how ugly her carpet was. *smiles* You can read the article at the following link:
What is also interesting about the eSight Eyeware company is that it was developed by someone who is personally affected by vision loss. Conrad Lewis' wife, sisters and himself all have some form of visual impairment. So he combined his experience working in the tech industry with his desire to help improve the lives of those with visual impairment to create this revolutionary company.

Friday, March 8, 2013

International Women's Day: Visually Impaired Women Worldwide

If you caught one of my previous post February Is... I express my love/hate paradoxical feelings toward awareness campaigns. I love them because they do bring awareness to causes but sometimes can further marginalize the groups that they are trying to help. The longer I think about it I'm starting to... dare I say it 'LOVE' them. My love/hate feelings arise from the fact that I can already perceive (in my mind at least) this global society where everyone is treated equally with their differences. Then I look around and realize that this isn't happening for everyone. My logic jumped from straight A to Z without considering all the other letters in between. When I look around a second time the seeds of change are sprouting and still are being planted. Sometimes I forget that CHANGE is a PROCESS not an event. Not everyone who is exposed to awareness campaigns will become a change agent but if they can affect at least one person then the are worthy. Awareness campaigns are the first step in making a better world for everyone. People have to be reminded that just because we take a day or a month to bring awareness for many people this is their daily lives.

Singer Kayley Rose Thriving w/ Stargardt's

When I was first diagnosed with Stargardt's I did a Google search on the disease to better orientate myself to my new circumstance. One of the first sites I came across was a blog called Living And Supporting Stargardt's Disease. It's written by Kayley Rose who is a remarkable person minus her having Stargardt's. She writes about her experience with the disease and how it hasn't stopped her from pursuing her dreams. She's an artist (her Facebook page can be found here), a teacher and is a professional singer even appearing on the British edition of the TV singing competition X Factor. The above video is audio featuring Kayley singing The Beatles song Something. Read about Kayley in her own words here.

If you liked the above post you might also be interested in the following:

*Disclosure some of the links are affiliate based with Amazon or Google and I do recieve a commission if links are clicked.

Thursday, March 7, 2013

I Gotta Go to Rehab... Its Not What You think.

Amy Winehouse famously sang the lyrics "They tried to make me go to rehab and I said no, no, no." in her hit song Rehab. Unlike Amy I acknowledge that I need to go to rehab... not for substance abuse issues but for low-vision. Now many of us who have low-vision will think that it isn't necessary for us to go but we must. Sometimes our pride gets in the way because we might not feel like we have a disability. The reason we feel like we don't have a disability is because of our ability to adapt. I didn't realize for a couple years before my official diagnosis of Stargardt's that I had been engaging in adaptive behavior. But with most people who have some form of macular degeneration our vision is deteriorating and we'll eventually need to adapt our behavior with some assistance.

March Update

Got over the Bump in the Road
If you follow this blog you might remember a previous post A Bump In The Road. At that time I had some difficulty with my health insurance and missed my 6-month follow-up visit with my ophthalmologist. well Tuesday I was able to finally go to my long awaited appointment. I can't give specific details on the exact change in my vision because I have to get the paperwork from my Doc. In April I'll do a side by side comparison between my first visit and this latest one.
What I have noticed is a slight decreased visual acuity in my eyes. I was able to read the first two rows of the eye chart. It was difficult to read the 3rd row though. I was surprised that my left eye is better than my right, I always thought it was the other way around. Also my doctor wrote me a referral to see in his words a "Super Specialist" so look out for future posts.

Another Way for the Stargardt's Community to Connect
Today I created two new communities on Google Plus. I have had the pleasure of meeting many fellow Stargardt's patients on Twitter and Facebook, but I know that everyone doesn't use those social networks. I noticed that Google+ didn't have a strong Stargardt's presence so I decided to create one. The community feature on the social network has its advantages over Twitter lists and Facebook groups. In communities you can better navigate through pasts discussions which eliminates redundant conversations. I made one group that is public so all posts can be searched on Google and I made a private companion support group for people who want to connect with other patients.
Since Stargardt's is a rare disease and patients are so widely spread around the world its vital for us to connect. The groups are open to everyone around the world and their families. 
They can be found here:
The public group - Stargardt's Disease Awareness 
The private group - Stargardt's Disease Support 

Before I go I have to give special thanks to Beth Omansky who is the admin of one of the two Stargardt's groups I'm in on Facebook Stargardt's Central. She created the group a year ago for people who were diagnosed who needed a private forum to get info and support with dealing with this disease. So that's what inspired me to make the Google Plus version so that more people out there can get support.

Monday, March 4, 2013

Nick News: Out of Sight: How Blind Kids See the World

Nick News: "Out of Sight" S1
Get More: Nick News Episodes,Nick News,Nick News Games

Back in January Nick News aired the documentary Out of Sight which gives a brief look into the lives of six kids who are visually impaired. Each child eloquently explains their experiences. The documentary is brief but gives a great overview of showing how technology has allowed them to be independent, what being visually impaired means to them, their dreams and how they handle having a sight impairment in a sighted world. I think this is great for parents of children who have been recently diagnosed with Stargardt's and even adults. Often when we are first diagnosed or have to face any perceived obstacle we focus to much on what we can't do instead of focusing on what we can do.
If you liked this post you may also be interested in reading the following:
Stargardt's Stories
Sami Stoner: Teen Cross-Country Runner w/ Stargardt's 
Inspiring Toddler
Some Misconceptions About Blind People

Friday, March 1, 2013

In the Pursuit of Chocolate, I found...

Godiva Clam Shell shaped piece of milk chocolate with hazelnet flavored chocolate filling.... yummy.
In the pursuit of chocolate last month, I found... no not sweets for my valentine but another overlooked use for my camera. In my post 2012 in Pictures I raved about how much I adore my Canon Powershot ELPH 310HS camera. So what new thing did I find? Well its use as a low vision aid. 
During the holidays back in December we got a box of assorted Godiva chocolates. The box came with a description of all the different chocolate flavors but the print was so small. Stargardt's disease and other forms of Macular degeneration mostly affect central vision which makes reading especially small print difficult. So what I did was I took the picture on the macro setting. Doing so allowed me to zoom in on the picture to clearly read the print. Oh if you were wondering if it tasted any good.... it was delicious.
So have you ever found an alternative use for a product or device you've used. Or what low-vision devices do you use throughout the day, would love to know.

Thursday, February 28, 2013

February is...

February is the shortest month of the year yet so much goes on during the month. In contemporary culture where it seems we are inundated with so much information its often difficult for many organizations to get their messages out to the masses. So what organizations do is they have awareness campaigns that involve designating a particular month, week or day to bring attention to their causes. I've done it myself with a previous post about Eye Disease and Premature Babies. Guess what... this post isn't going to be any different well maybe a little different *smile*.

Wednesday, February 13, 2013

Discussion: Genetic Testing

By Jerome Walker,Dennis Myts (Own work) [Public domain], via Wikimedia Commons | Image Wiki  | Image File

"You are not the father!" I know, I know interesting phrase to start off this post with, but trust me read further along and it'll make sense. For those of you in the US who are familiar with daytime TV you know the phrase is from The Maury Povich Show. One of the most popular topics on the show deals with paternity of children which are conducted via DNA analysis. DNA analysis isn't just performed with issues of paternity but also in the areas of crime forensics and anthropological studies to name a few.

Often times when it comes to issues of genetics or DNA we are concerned with paternity or in criminal cases but not when it comes to having children. When I was first diagnosed with Stargardt's I was concerned with how vision loss would affect my ability to be a mother. (There are several wonderful visually impaired moms out there) I wasn't so much concerned about the possibility of passing this disease to my potential children or even on how I inherited the disease myself.

Now Stargardt's isn't the only inherited disease in the world but diseases like it do bring up discussions in family planning and genetic counseling. Many Stargardt's patients are advised to get genetic tests done so they know what form they have and for research. I myself haven't had the test done, but hopefully will so in the future. If you or a loved one has Stargardt's you can check out Asper Biotech's DNA Testing Services.

I just wanted to talk about this topic as a discussion. Just wanted to know if other Stargardt's patients have had the DNA tests done. I also want to know from others how do you think genetic testing will affect people's choices in family planning. Leave your comments below and share this post.

Monday, February 11, 2013

Sh#t People Say to Blind People

"Why is there braille on drive-thru ATM machines blind people cant' drive?"

Response: Have you ever heard of a passenger's seat

"Why is their signs in restaurants saying 'Braille Menu Available', blind people can't see that?

Response: Blind people have sighted friends and family.

"Why would blind people have an iPhone?"

Response: There's an accessibility app for that.

"I'm going to speak slowly and loudly to you so you can better understand me."

Response: So by doing that you're saying being blind means that I'm also deaf and have impaired comprehension.... okay.

"See if I cover my eyes I can see what a blind person sees."

Response: Actually a very small percentage of the visually impaired see darkness. Most do have light perception. 

"You're not blind you're faking it."

Response: Just because I have ambulatory vision (the ability to see around a room) doesn't mean I can see everything. (This is how most people who have low vision see.)

Monday, February 4, 2013

February Update & 111 Things List

Its time for an update!
I don't know if regular followers of mine remember back in November my post A Bump in the Road. I was having a little difficulty with my health insurance, well its resolved now. So I can get a better update on the state of my vision with my doctor. Also I have a question for anyone out there who lives in the New York City Metro Area. Can anyone recommend any good low-vision specialists? Feedback would be so greatly appreciated.

111 Things List
On tumblr which serves as my personal blog I created the 111 Things List. It could be described as a bucket list or even similar to a New Year's resolutions list. Its really based off of the 101 Things in 1001 Days List from DayZeroProject.com. The difference is this list isn't terminating like the previously mentioned list. When you complete one item you create another one, this way you keep creating your life experiences. I came across the 101 Things in 1001 Days list from Amy Schmittauer, who is a YouTuber and social media expert. She also made the video I watched that finally convinced me to buy my digital camera that I absolutely love. So shout-out to her. If you're doing something similar I would love to hear about it. You can visit my list here.

Other Things

I want to thank VisionAware for featuring this blog on their blogroll of visually impaired bloggers. So thanks!

Also I made a collaborative blog on tumblr called These Perspectives. I noticed there is quite a large visually impaired community on the site so I wanted to create a blog for people to share their stories. If you are on tumblr and would like to be a collaborator of the blog you can send me a message through my contact page which is here.

Lastly, if you use Twitter and you or a loved one want to connect with others who are living with Stargardt's you can check out my twitter list here.

Don't be shy to leave a comment on any of my posts. I made responding to my posts easier and you can post anonymously if you would like.

Friday, February 1, 2013

Michael A. Williams, Award-winning artist w/ Stargardt's

Michael A. Williams has Stargardt's Disease and describes himself as an "Inspirational Blind Artist" He's been creating outstanding art pieces since he was a child and was diagnosed with Stargardt's in his teens.

In the above video Mr. Williams talks about living with Stargardt's, his art and his mission to encourage the visually impaired to get involved in the visual arts.

Following link will take you to Mr. Williams website where you can view and purchase some of his beautiful paintings.


Thursday, January 31, 2013

AMC Theatres Making Their Theaters Accessible

So AMC Theaters is in the process of making their theaters more accessible for visually and hearing impaired individuals. The company says that the upgrade will be fully rolled out in 2014.
Check out more at the following link:
Hearing-impaired, vision-impaired moviegoers to get help at AMC theaters

This is pretty cool what do you think? Don't be shy to leave your comments below.

Friday, January 25, 2013

Sami Stoner: Teen Cross Country Runner w/ Stargardt's

Being legally blind literally hasn't slowed teen cross country runner Sami Stoner down. The above video titled A Girl's Best Friend is from the ESPN series E:60 showing Sami living and thriving with Stargardt's Disease.

Thursday, January 24, 2013

Fleksy - Happy Typing!


I love tech gadgets especially my cell phone (HTC EVO 4G) but I don't text message. What I think is cool about the above video is how blind people were beta testers for this predictive text message app. The mobile phone app is called Flesky and is designed to use predictive text technology to send more accurate messages. The company claims that the app is so accurate you don't even need to look at the phone to type.

To be a Beta Tester for the Android App or Spainish App go here: http://beta.fleksy.com/#0

To see the preview for iPhone go here: http://fleksy.com/app

Do you know of any other products where blind or visually impaired individuals helped develop a product for the masses? If you are a big texter what apps do you use?
Leave your comments below.

Some Misconceptions About Blind People

On one of my information seeking journeys on the vast spacial plane that is the interwebs (internet for non nerds) I came across some information about misconceptions about blind people. Many sighted people and even some people in the blind/visually impaired community often believe these misconceptions simply due to ignorance. One article I found was Delco Daily Top Ten: Top 10 Misconceptions about Blind People. The article was by David W. Wannop who "is a music journalist, talent developer, booking agent, and show host based in Center City Philadelphia.