Glaucoma is a group of eye diseases that damage the optic nerve and can result in vision loss and blindness. The leading cause of blindness in people over 60 years of age damage caused by glaucoma is permanent and cannot be reversed. The good news is if caught early glaucoma can be treated and controlled.
The silent thief of sight, most people don’t notice they’ve lost vision to the condition until it’s too late which is why prevention is so important. In recognition of World Glaucoma Awareness Week March 12-18, 2017, I will share information each day on this topic.
Being diagnosed with primary open-angle glaucoma a few years back I had no symptoms but I’m very fortunate because of my other eye issues my retina specialist and ophthalmologist monitored my situation very closely. Initially I was diagnosed with ocular hypertension which meant my intraocular pressure (IOP) was high. While most eye care professionals define the range of normal IOP as between 10 and 21 mmHg, which is a pressure measurement, my range was running around 30 to 40 mm. I’m a little fuzzy on when my condition went from ocular hypertension to glaucoma but I wasn’t surprised by the diagnosis since my grandmother also had the disease. Even though it took quite a bit of time to get to the diagnosis it wasn’t the end of treatment because in addition to seeing my ophthalmologist every four months, to maintain my remaining eyesight I have to take Latanoprost (eye drop prescription) everyday for the rest of my life.
I want to inspire people. I want someone to look at me and say, ‘Because of you I didn’t give up.’~Paul Mugambi
Have I got a treat for you today! Hold onto your seats because this post is going to be a unique Fierce Friday.
Earlier this year I briefly talked about some of the emails I receive from readers around the world who visit my blog. I was especially touched by one reader from Kenya who is a soft spoken determined activist working to change attitudes within the community as it relates to the social issues that affect people with disabilities.
Typically on Fridays I write about blind and vision impaired women who are making a positive impact in the community through their careers, art, photography, writing, advocacy, poetry, and leadership. Today it give me great pleasure to introduce you to Paul Mugambi, Disability Rights Practitioner and musician from Kenya.
Paul, who abruptly lost his vision at 15 years of age when he got caught up in an altercation, has a remarkably positive outlook on life that’s positively contagious. Admittedly the initial loss of his sight was very challenging but his faith in God and ultimately acceptance of the situation helped him to adapt and move on. An move on he did–he has been featured on several TV programs (third link) and has received multiple awards, among them the Disability Champion award by CBN International for being a role model to those in the employment sector and ensuring policies are inclusive and working for better services for people with disabilities.
We want to be mainstreamed alongside others and share the experiences which we have to to tell our story. ~Paul Mugambi
Educating people and bringing awareness on issues concerning disabilities are very important to Paul but there is one project he told me about that’s very close to his heart–bringing white canes to Kenya. According to Kenya’s 2009 census survey, people who are visually impaired makeup the second largest group of impairments after those with physical impairments. However, since white canes are not manufactured locally they are unaffordable to many people who would greatly benefit from these mobility devices.
Paul is very passionate about his cause and it shows in his music. So what makes Paul’s music stand out from the rest? Aside from the upbeat tempo, if you take a peek at the two music videos you’ll notice almost immediately that he uses his white cane. I don’t know about you but I’ve never seen this done by a musician in a video. He goes further by showing someone reading Braille, and showing people with other disabilities.
You never really appreciate your independence until you find yourself in a situation where you have to rely on others. A white cane may seem like a simple tool but it can be a virtual lifeline to a visually impaired person who otherwise would not be able to navigate safely by themselves. It is a device that when used properly, not only helps the user to become oriented to their environment but it also serves as a beacon to those who are sighted to let them know the user has a vision impairment.
What keeps many blind people in dependency is not so much the blindness itself, but the lack of opportunity. Blind people need the chance to become educated, to develop their own interests and abilities, and the opportunity to seek employment on a fair and equal basis with others. ~Paul Mugambi
The other key pieces to Paul’s efforts in obtaining white canes in Kenya are orientation and mobility training for people with vision impairments and awareness campaigns for the general public. Paul understands the need for awareness and education for the safety of vision impaired people and the public at large.
No one who is blind or vision impaired should be subject to remaining wholly dependent on others when a white cane can open the door to inclusion and opportunities. If you know of any services or programs that could help Paul achieve his goal please leave a message in the comments or you can send me an email at firstname.lastname@example.org or email Paul directly at email@example.com.
I hope you enjoyed Paul’s news and music videos. Even though I don’t speak the language I love the music and was so moved to see first-hand an inclusive music video.
“I am an artist who has created awareness through music on the usage of white cane, road safety and disability awareness.” ~Paul Mugambi
Lately it seems I’ve been connecting with more women new to vision loss and as such I wanted to repost the following article that was originally published early last year. In this post I talk about one aspect of sight loss that really messed with my head; makeup application.
If you are new to the loss of sight (no matter the degree of loss) the first thing I would let you know is that your vision or the lack of it does not define who you are. The second thing I would advise is to allow yourself time to grieve. Losing vision is not an easy process to go through yet there are ways to overcome the fear, and carry on with day-to-day living.
While there are those in the eye care profession who may tell you there is nothing more that can be done, you need to know there is tons of help available and you can continue to lead a wonderful, beautiful, and fulfilling life.
Lifelong Liner Lover Affair Ends
I was desperately downcast and despondent. It really doesn’t get any worse than this. When my good eye became suddenly defunct, yes, I was understandably upset. My whole world became a state of confusion.
Applying eyeliner, especially liquid eyeliner, is not for the faint of heart. In my early days of attempting to apply liquid eyeliner my hand would literally shake as the tip of the brush would near my eye. Even though I only used the liquid liner on my upper lids (used pencil under the eye) in the beginning there were many days I made a complete mess and would have to start over. It took some time, but once I perfected my technique, in a flash I could do both eyes with one hand tied behind my back.
Over the years I tried different types and brands of eyeliners from liquid in the elongated tube, to the felt tipped liners. The type that I liked the most was in a little inkwell-type bottle and because the tip of the wand was considerably shorter than those in the elongated tubes it added to the ease in application.
That cliché “when life hands you lemons make lemonade,” didn’t work for me when I initially lost my vision. As a matter of fact, it was during my first crack at what used to be my makeup regimen that had I possessed a few lemons, I would have thrown them down to the ground, stomped them and then put them in the garbage disposal for good measure.
Loathing the Lack of Liner
For a woman who would never consider leaving home without makeup, I was now faced with a major life decision: continue down the road of self-pity or, and this is huge, go without.
I chose self-pity because quite frankly I was good at it. I mean, I couldn’t see, couldn’t put on my ‘face’ so the solution was to wallow in it and wallow I did. But as all good things must eventually come to an end so did my little pity party.
Learning to do my makeup again within the constraints of my vision loss was a bit of a challenge. A few familiar products just needed minor tweaks and others I had to replace. For example I no longer liked applying liquid foundation and began using minerals as I found them so much easier to blend. Using the pencil liner under the eye was easy, however, the liquid liner I was accustomed to, gave me serious grief so I gave it up.
It’s been about 5 years since I’ve gone without liner on my eyelids. While I feel comfortable without it in my last Sephora order I bought some pencils to give it one more try. To my delight it works!!! Yay!!!
So how do I use the pencil?**
Closing my eye, I gently pull my eyelid taut at the outer edge.
Resting the palm of my right hand on my face helps to steady my hand when applying the liner.
Using short feathery strokes of the pencil I start from the inner eye and work my way to the outer edge of my upper lash line.
I gently smudge the line after applying to soften the look and if per chance my line isn’t completely straight smudging helps to cover the flaw.
The pencil I use is the Mini Contour Eye Pencil 12hr Wear Waterproof, Black Lace – Black from Sephora www.sephora.com I like working with a shorter pencil as it’s easier to handle and the crayon glides on very easily.
UPDATE: I was able to use the Sephora pencil for about a month before I began having eye irritation. Through process of elimination I was able to confirm the issue was with these pencils as I tried others later in the year. The pencil I use now (and I love, love, love) is Rimmel Exaggerate Eye Definer. The retractable liner practically glides as it goes on so smooth. An added benefit: it’s waterproof and comes with its own built-in smudge tip.
**If you experience issues with your eyes and/or vision, while no one can know how they will react to specific cosmetics or skin care products, it’s prudent to check with your eye doctor prior to using any kind of eye makeup.
“Taking joy in living is a woman’s best cosmetic.” ~Rosalind Russell
Happy Friday!! I don’t know about you but I am so glad that it’s the weekend I’m not sure what to do with myself. This morning the thermometer registered a cool 3 degrees fahrenheit with a wind chill around 7 below zero or thereabouts. Layers were key, although my secret weapon (hot flashes) kept me rather comfy/cozy.
I want to dive right into today’s topic because it’s one that’s close to my heart. Donna Hill, author of the novel The Heart of Applebutter Hill, and the blog with the same title, wrote an interesting post yesterday and with her permission I will share with you today. But first a little on Donna.
Like many of the women I feature on Fierce Fridays I have not had the pleasure of meeting Donna in person but we but we connected through our mutual love of blogging. What caught my attention about Donna was finding out she also lives in Pennsylvania (I always get a little extra excited when I come across bloggers who are within my geographical area).
To describe Donna it’d probably be easier to list what she hasn’t done because she is so multi-talented. She’s a speaker, writer, advocate, musician, and breast cancer survivor with a range of interests from education, knitting, and animals to chocolate. And she doesn’t know this until she’ll read about it here, but she shares my affection of the Stephanie Plum series of books written by Janet Evanovich.
Donna, who was born legally blind from Retinitis Pigmentosa (RP), a rare, inherited eye disease that causes severe vision impairment and often blindness, developed a short quiz on her blog yesterday that encourages us to ponder what we think we know, or increase our knowledge of blindness. I wanted to share this to hopefully help alleviate the some of awkwardness on discussion about, or being around people who are blind or vision impaired. Since we’re operating on the honor system here, below the multiple choice questions are the answers then some resource information follows at the end of the post.
What Do You Know About Blind Americans, Their Skills & Challenges?
True or False
Most blind people are either born blind or lose their vision as children.
People using guide dogs and other service dogs are allowed in public places, but it’s OK for the business owner to have a separate place for them.
The largest group of people with print disabilities who need books in accessible formats are not visually impaired.
Most of the people who are considered legally blind have no vision whatsoever.
If you meet a blind person, you can reasonably assume that they will need help doing ordinary things such as crossing the street, using the bathroom or cutting their food.
When talking to a blind person, you should always Speak louder than usual.
Blind people can’t use computers.
Blind people need to live with someone who can see.
A blind man drove a car around the Daytona racetrack without sighted assistance.
All websites are designed to conform to accessibility standards, so that people using screen readers, magnification programs, Braille interfaces and voice recognition software can use them.
In which of the following occupations have blind people already excelled?
a) medical doctor
b) NASA engineer
e) All of the above
f) None of the above
Which of these statements best describes the availability of accessible books for people with print disabilities?
a) Every new book is made into accessible formats for people with print disabilities within the first month after publication.
b) About two-thirds of all new books are made accessible.
c) Only 5% of new books are made into accessible formats.
d) No books are made accessible until someone specifically requests them.
If you want to guide a blind person to a chair, a bus stop or store, you should:
a) hold onto their arm and gently push them along
b) put your arm around their shoulders as you walk
c) take their hand
d) ask them if they’d like to take your elbow.
If a blind person has a guide dog, you should:
a) hold the dog’s guiding harness,
b) talk to the dog,
c) give the dog a treat
d) ignore the dog entirely
If you want to pet a guide dog, you should:
a) Pet their head
b) Get down so you’re at eye-level with the dog
c) Ask permission
d) Just go for it, as long as the dog looks friendly.
Which of the following statements about Braille is true?
a) Braille is the only form of reading and writing for people who can’t see print which offers the same level of literacy as print.
b) Braille can be read on small, portable digital devices that can hold many Braille books.
c) Braille is taught to less than 10% of blind children.
d) All of the above
e) None of the above
Rehabilitation counsellors say the biggest hurdle their newly blind clients must overcome is:
a) Learning to use a guide dog or white cane
b) Learning to read Braille
c) Learning to use a computer with a screen reader.
d) Changing their own beliefs about blindness.
Encouraging middle school and older students, colleagues and others to read The Heart of Applebutter Hill, which features a 14-year-old girl who is losing her sight, can do which of these?
a) give readers a safe place to meet a blind teen and other people with disabilities b) going about their daily lives.
c) develop an awareness of the issues facing people with vision loss.
d) raise awareness about bullying and how it impacts kids with disabilities.
e) give readers the opportunity to read a fun and suspenseful story.
f) all of the above.
g) none of the above.
Answers to the “What Do You Know About Blindness?” Quiz
“*” = further info & references are below True or False
False: A very small percentage of vision loss happens at birth or in childhood. Most blind people grow up sighted. The CDC predicts a tripling of diabetes-related blindness in working age Americans by 2050.*
False. Equal access under the Americans with Disabilities Act specifically prohibits businesses from confining service dogs to areas set aside for pets, such as pet rooms in motels, and allows them access to all areas open to the general public. Service dogs must be under control, however.*
True. Most students who require books in alternative formats have learning disabilities such as dyslexia, not visual impairments. In fact Learning Ally (formerly Recording for the Blind), which provides recorded books read by volunteers, says that 75% of their 300,000 subscribers are learning disabled.
False: According to the American Foundation for the Blind, “Only 18 percent of people who are visually impaired are classified as being totally blind, and the majority of them can differentiate between light and dark.”
False. Assumption about anything is problematic. The causes, extent and the length of time a person has lived with vision loss, the training and quality of rehabilitation they have received and the beliefs about blindness held by their families and friends, along with their innate strengths and weaknesses make it impossible to “assume” anything about what they can or cannot do.
False. Just like the general population, some blind people have hearing loss, but most hear normally. And, no, blind people don’t have super senses; they just pay more attention to their remaining senses .
False. Text-to-speech (aka screen reading) technology enables blind people to prepare, format and edit documents, read and write emails, surf the internet and use cellphones.
False: Blind people live in many situations including alone. They can cook, clean and handle household finances as well as a sighted person, if they have the proper training, equipment and a “can-do” attitude. They ski, surf, climb mountains and participate in society as volunteers, politicians and parents.
True. on January 29, 2011, preceding the Rolex 24 at the Daytona International Speedway, Mark Riccobono (currently president of the NFB and at the time Executive Director of the NFB’s Jernigan Institute) drove a modified Ford Escape at 30 mph around the raceway. Blind and blind-folded, he received real-time information via vibrations sent to his fingers, back and legs that allowed him to make independent decisions about speed and steering.
False. The ADA and other laws governing access to the internet and digital software are complaint driven. Despite almost a quarter century of public awareness campaigns and landmark rulings and out-of-court settlements, much of the internet remains off-limits for people using adaptive software. Often, the problems are simple to fix, like properly labeling buttons or links and using text-based security questions instead of graphic CAPTCHAs. Even audio is problematic especially for those who are deaf and blind. Free resources are available to help web designers create accessible PDF files, Flash, Java and other web design elements. *
Answer: E. Yes, all of the above and more. Technology is enabling blind people to excel at professions assumed to be off-limits without sight, including the sciences.*
Answer: C. The World Blind Union states that only 5% of books are made accessible. This puts blind people at a significant disadvantage vis-à-vis their sighted peers in education and employment.*
Answer: D. Allowing a blind person to hold your elbow means you will be leading and they will be following. It’s more comfortable for everybody.
Answer: D. Never touch a guide dog or any part of the dog’s guiding equipment without specific permission.
Answer: C. Always ask before approaching, talking to or touching a guide dog, and respect the person’s wishes. Guide dogs are “on duty” when their harness is on, even if they’re sprawled on the floor snoozing. Failure to respect these boundaries sends a conflicting message, can cause the dog to be distracted and could lead to problems down the line. Sometimes, it may be OK, but let the dog’s handler make that call.
Answer: D. Listening is wonderful, but it isn’t literacy for sighted people and it shouldn’t be for blind people either. Spelling and grammar are felt in real-time as a person reads Braille. When using a screen reader, a person can go back and read character by character to catch the spelling and punctuation; this is an extra step, however, and you have to remember not to assume. After all, not everyone spells names like John and Debbie the same way.
Braille is part of the digital revolution, making it possible to access far more books than ever before. Students can carry all of their textbooks in a small digital device with a refreshable Braille display. Nonetheless, Braille literacy has fallen to about 10%, despite the increased availability and portability of Braille books and strong links between Braille literacy to success in higher education and the workplace. This is due to a shortage of qualified Braille teachers, low expectations and a general societal loss of an understanding of what literacy actually is.
7. Answer: D. Blindness is not like other minority groups. Most of the time, whites don’t wake up one day as African-Americans, men don’t suddenly become women and straights don’t just end up gay. This, however, is exactly what happens in most cases of blindness and other disabilities. Since most blind people grow up sighted, they form beliefs in childhood about what it means to be blind. These beliefs are often negative and based upon misinformation and prejudice. If you believe that life as a blind person would be devoid of independence, productivity and joy and then lose your own sight, these beliefs form a major stumbling block to living life at its fullest.
8. This is a bit of a trick question. I hope the answer is “all of the above.” Won’t you read it, and tell Donna what you think?
Donna, thank you for being proactive in creating this tool to help provide deeper insight into the realm of blindness and vision loss.
More Info & References:
Statistics on Blindness
Statistics on blindness and visual impairments are difficult to interpret because of differences in definitions and methods. Also, until recently, blindness was lumped in with other disabilities even by the Department of Labor and Industry for employment statistics. For more about this issue see the latest issue of the Research Navigator from the American Foundation for the Blind: www.afb.org/info/programs-and-services/public-policy-center.
Based on data from The 2013 American Community Survey, the Current Population Survey (CPS), which looks at functional visual impairment (people who are still reporting difficulty seeing well enough to perform everyday tasks despite correction): 2,100,000 people Ages 16 to 64 report visual difficulty. There are another 2,018,000 over age 65 (1,296,000 of whom are over 75). Visit the Data Corner of the National Research and Training Center on Blindness and Low Vision at: www.blind.msstate.edu
In contrast, the American Printing House for the Blind collects data on children and youth eligible for adapted educational materials from APH through the Act to Promote the Education of the Blind, based on visual acuity. The total number of non-college students (infants and older) is 60,393.
Accessible Books for People with Visual Impairments and Other Print Disabilities
Here’s a comparison between what’s available for print readers & what’s accessible for those with print disabilities
36 million – the approximate number of books and other print materials in the collection of the Library of Congress (according to LOC.gov) with 12,000 added daily.
300,000 – approximate number of titles available from Bookshare, the world’s largest accessible online library for people with print disabilities. Note: Bookshare provides their collection in several downloadable formats, including DAISY text, synthetic speech and refreshable Braille.
80,000 – approximate number of titles available from Learning Ally – formerly Recording for the Blind & Dyslexic – the world’s largest library of human-narrated audiobooks, as of October 30, 2014.
80,000 – books in audio format available through the National Library Service for the Blind & Physically Handicapped (NLS), a division of the Library of Congress.
31,338 – books available in braille from NLS.
For more information and to learn about the Marrakesh Treaty and how ratifying it can help, read “Is Literacy Really for Everyone? – the Numbers Tell a Different Story” at: donnawhill.com
The Blind Driver Challenge ™ (BDC) is a joint project between the National Federation of the Blind (NFB) Jernigan Institute and Virginia Tech’s Robotics and Mechanisms Lab (RoMeLa). The Jernigan Institute is the only research and training facility on blindness operated by blind people. Dr. Dennis Hong, RoMeLa’s director, stepped forward after NFB President Emeritus Dr. Marc Maurer challenged America’s universities in 2004 to develop a car blind people could drive. An initiative to develop nonvisual interface technology that conveys real-time information, the BDC received the 2010 Application of the Year Award at the National Instruments Graphical System Design Achievement Awards. The Virginia Tech/TORC BDC team project also received the Graphical System Design Achievement Award in the Robotics category. blinddriverchallenge.org
Accessibility to websites, software and digital technology for people with visual impairments is limited. This profoundly impacts education and employment. The November, 2011 issue of the First Monday Journal (University of Illinois, Chicago) features an academic study explaining the issues and recommending solutions.
“Retrofitting accessibility: The legal inequality of after-the-fact online access for persons with disabilities in the United States” by Brian Wentz, Paul T. Jaeger, and Jonathan Lazar: www.uic.edu
It warns that disability laws are creating a “separate but unequal” online environment and a “permanent underclass.”