Category Archives: Advocacy

Census 2020

Thirty Days to Census 2020 Deadline

If you haven’t heard the news by now, the US Census Bureau is ending all counting efforts for the 2020 census on September  30, a month earlier than previously announced. So that means if you haven’t filled out your form time is ticking and the opportunity to be counted is quickly closing. I completed my census back in March and found the experience fairly easy, stress-free and very accessible so much so I am sharing my experience with you. If you have not filled out your census form, I encourage you to do so in the next 30 days.

2020 Census is Totally Accessible

I found the 2020 Census totally accessible. In the past I would have to get a sighted person to read the questions and fill out the forms for me; but this time around I was able to handle the whole process independently. Historically people with disabilities have been under represented and so this year strong efforts are being made to make the census inclusive and accessible to everyone. A downloadable and printable Census Bureau fact sheet on accessibility is available to learn more about these efforts.

Once I got my census documents in the mail, I went on line to the census website. I use a screen reader called JAWS which stands for Job Access with Speech. This screen reader allows me to access the Windows operating system such as Word, Excel and Outlook. I can also access things like PDF files and get online with Google. I am even able to write this blog and manage this website in WordPress! It has allowed me to work, live and play as a blind person.

But back to the census. So, I went to the site and logged in with my census ID number. There was a series of questions I had to answer and it took me about 15-20 minutes or so. At the end they had the option to review your answers before submission. Strangely, for some reason that screen didn’t pop up and I could only press the submission button. Next, I got a confirmation screen with a confirmation number and the option to save and print; which I did. I called the census toll free number to alert them to the small hiccup I had with the verification screen and was told that others had had the same problem. They apologized and said they were working on that issue. Aside from that small glitch I found completing the 2020 census to be totally accessible. Additionally, I could have opted to call verses doing the census online. Now, that I am done I want to encourage you to do the same. If you haven’t already here are some reasons why.

Census results help determine how billions of dollars in federal funding flow into states and communities annually. That’s billions with a B! The results also determine how many seats in Congress each state receives. Community leaders and elected officials rely on accurate census data to make funding decisions about education, senior citizen and veteran supports, along with other community allocations. Therefore, it is important to have accurate numbers. Everyone must be counted including people with disabilities! The Centers for Disease Control  and Prevention (CDC) says nearly 1 in 4    people in the United States has a disability with nearly 5% having a visual impairment. This means that having some kind of a disability impacts all of us.

Census data plays a vital role in people’s everyday life Even though the census comes around once a decade. Specifically, census data determines allocations for real-life necessities like health care, public transportation, special education grants, Social Security, Medicare, Medicaid and other benefits. In addition, the census helps advocates, community leaders and politicians address inequalities in housing, health care, employment and education.

Valid census data also helps ensure fair voting representation and enforcement of voting rights laws. Federal tax dollars cannot be distributed fairly and effectively without an accurate accounting of the population.

Lastly, when completing your census form you can feel confident that your information will be private. Your answers are kept anonymous. They are used only to produce statistics. The U.S. Census Bureau is bound by law to protect your answers and keep them strictly confidential. The law ensures that your private information is never published and that your answers cannot be used against you by any government agency or court. Additionally, no identifiable information about you, your home or business, even to law enforcement agencies can be released.

So, when you get your census form complete it. Go online, call the toll-free number (1-844-330-2020) or get a sighted person to assist you. This year the 2020 census is accessible so there is no excuse to not do your part and be counted.

Empish Working in Home Office

Working and Writing in the Disability Non-Profit World

If someone told me in college while pursuing a journalism degree that 6 months after graduation, I would be visually impaired and later have a career in the disability non-profit world I would have said they were crazy. But that is exactly what happened! During that time, I was laser focused and incredibly ambitious; obtaining a public relations internship each semester. I was determined to work in Corporate America, make lots of money, own a home and a fancy car. However only one of those things happened! I got the home but the rest went out the window. Obviously, God had other plans for my life. I ended up working and writing in the disability non-profit world as a direct result of my disability.  It has been about 20 years and I have no regrets. So, why am I sharing all of this? Well, today is National Nonprofit Day.  This day recognizes the goals and positive impacts nonprofits have on communities and the world. Through nonprofits, awareness, research, and aid reach the people who need it most.

Working at Disabled Non-Profits

This above statement holds true because after losing my vision I needed to understand how to advocate for myself as a disabled person. My career plans for Corporate America didn’t pan out. Plus, I wanted to find a way to use the well-earned journalism degree I had just recently obtained. So, for 7 years I worked at disABILITY LINK, an independent living center that focused on advocacy, peer support and self-determination for people with disabilities. There I learned about ways to speak for myself, advocate for others and the self-confidence to start writing.  My next job was at the vision rehab center that provided the training I needed to be more independent as a blind person. At the Center for the Visually Impaired I worked as their public education and outreach person. I gave speeches, conducted tours, managed volunteer speakers, wrote for the community bulletin and started their blog, SightSeeing. Also, I was side hustling working for two other nonprofits. At Disability Resource Group I was contracted to do public education and community outreach on their breast cancer project. I reached out to disabled women encouraging them to get annual mammograms and supporting them in self-advocacy.

Writing at Disabled Non-Profits

The other nonprofit was Blind Skills, Inc who published Dialogue Magazine. For 17 years I wrote a career column where I interviewed blind and visually impaired people about the types of jobs and careers they pursued. Over the years I met chefs, small business owners, travel agents, property owners, musicians, artists, app developers, school teachers and more. Using my blogging experience and interest in web coding landed me a contract position with VisionAware where I coded and edited blog posts from our visually impaired peer group. Today, I  work from home  as a freelance writer. I have a contract assignment with Outlook Business Solutions, another agency that focuses on helping those with vision loss. There I write and edit blog posts and have written stories for their annual report.

Volunteering at Disabled Non-Profits

Empish with Guest Roderick Parker at GaRRS Studio

While working and writing at nonprofits I developed a sincere passion for the nonprofit world and the mission they have to help those in need. I used my journalism skills in a new meaningful way through a volunteer opportunity at the Georgia Radio Reading Service. Instead of writing I was on the radio in the broadcast world. I hosted and produced a show called Eye on Blindness for about 3 years. I interviewed guest in the blind community on a variety of topics. I no longer volunteer at the radio station but write Occasional blog post for VisionAware and recently wrote a post for one of my favorite libraries and another non-profit, Bookshare about the ADA.

Who would have ever known this would be the direction my life and career would take me? But I have embraced it and am grateful for this wonderful journey; that is still not over. I encourage you to learn about non-profits, support them either as a volunteer or by monetary donation. We need them in our community, society and the world.

ADA 30th Anniversary Logo

Four Reasons I’m Thankful for the ADA

July 26th will mark the 30th anniversary of the Americans with Disabilities Act (ADA). It was in 1990 when I was a freshman in college that Former President George H. W. Bush signed this powerful piece of civil rights legislation into law. On that day, with  disability advocates and policy makers present, the door was  opened wider to more opportunities and access. People with disabilities have struggled with full inclusion into mainstream society for many years and the ADA was passed to help remedy this problem. The ADA has four principals: equality of opportunity, full participation in society, independent living and economic self-sufficiency for individuals with disabilities. Additionally, there are five titles:  employment, transportation, state and local government, public accommodations and telecommunications. I lost my vision many years after the ADA was passed so didn’t know much about this law or feel its full impact. It wasn’t until the late-90s when I was dealing with employment and transportation that I began to completely understand its authority and be grateful for its existence.

First Reason is Employment

When I went blind, I was young and entering the workforce. My employer was familiar with the ADA and provided work accommodations. I was given magnification devices, low vision aids and later when my vision worsen screen reading software for my computer. Since that time at every job I have received the necessary work accommodations. using these tools have not only helped me to work, but continue working, boost my self-esteem and enhance my quality of life.

Second Reason is Voting

I have been voting since I was eligible, but when I went blind the process changed. Thanks to the ADA I can now vote with accommodations. State and local governments must provide assistance to a blind person whether it is to offer an absentee ballot, read voting information and/or have an accessible voting machine. I have shared about my recent challenges voting in Georgia’s primary elections but it is because of the ADA that I can speak up and advocate for myself.

Third Reason is Website Accessibility

Since I work from home and use the internet constantly, I interact with inaccessible websites daily. Graphics with no alt text, edit boxes that don’t work, check boxes that don’t check and on and on. I also struggle with inaccessible mobile apps on my iPhone. But the ADA says that websites must be made accessible to people with visual impairments. Some folks say that the ADA does not specifically address the internet and was written prior its creation but the world wide web is considered a public accommodation and is covered by this law. A recent lawsuit against Domino’s Pizza demonstrates this point.

Fourth Reason is Entertainment

Empish at Concession Stand Purchasing Popcorn

One of my favorite forms of entertainment is watching a movie. A fast-pace action, suspense thriller, a funny comedy, a classic animation, a gory horror or a sappy romcom—I love them all! But the funny thing is that I didn’t really get into movies until I went blind and couldn’t see the screen! Go figure?! Then I really, really didn’t get into movies until audio description became readily available. The ADA requires that movie theaters provide audio description to blind and visually impaired people so now I can watch the latest blockbuster.

If you are a person with a disability or know someone who is what ways are you thankful for the ADA? There are a lot of things we still have to work on when it comes to equal access and full inclusion. As I shared before, I still struggle daily with website accessibility and mobile apps. I also have challenges with attitudinal barriers because of the intersectionality of my disability, race and gender that I contend with often. However I celebrate the numerous achievements we have made in these past 30 years and look forward to more success.

Row of Voting Booths

Multiple Problems I Had Voting in Georgia’s Primary

As you may well know there were multiple problems with Georgia’s primary on Tuesday, June 9th. So much so that it gathered not only local attention but national as well. There were problems not only with voting in person but the mail in process. People are still talking about it as we all try to figure out what in the world happen! And more importantly try to keep this from happening again during the upcoming Presidential election in November.

I had talked about the lack of accessibility being a major hindrance for me in a previous post so I won’t rehash that here but rather share about the multiple problems I had voting absentee. I am typically not a procrastinator but after a lot of thought I ultimately did decide to mail in my ballot verses going to the polls. I figured it would be the best thing to do with the coronavirus and all that was happening. But as I read the news coverage of people who voted in person it seemed that it really didn’t matter because there were problems either way you voted. If you went in person there were people standing in long lines in the heat. Poll workers unfamiliar with the new machines. People trying to keep social distancing. Poll locations that had moved. People who didn’t get their ballot in the mail in the first place and on and on. So, I am scratching my head at the whole voting process and wondering what in the heck happened?! All I know is that things have got to change and quick. Now, I am taking a minute and reflecting on the problems I personally had voting.

First problem was the application process to get an absentee ballot. I got an application for my ballot in the mail and got a sighted friend to assist me. Although I had to get sighted help the real tricky thing was how you had to complete the application to mail it back. It had to be folded in a particular way, which meant cutting off part of the bottom, Scotch taping it back just right and placing a stamp. I found this process a bit strange as it was described to me. I also knew that it was something that I could not handle as a blind person. Why all the fuss for the application for an absentee ballot? Why make the process so complicated? Could there not have been an easier way?

Second problem was confusion about the candidates on the ballot. Since the primary had been moved from May to June there was confusion about what candidates would appear on the ballot. I had voted early in March for the Presidential primary so that part was not on my ballot but would  have been along with other candidates. This made the ballot very long. When my sighted friend tried to print out the online sample ballot it was several pages. My actual ballot was a long page both front and back. Also, I noticed a duplication. One candidate I had voted for in March also appeared on this ballot in June.

Third problem was trying to read the online sample ballot. I found the sample ballot in a PDF file somewhat accessible. I could read the information but because of the number of candidates for this election some of them would bleed into the wrong section/column. This led to my confusion and disorientation as to who was running for what. It took me several hours to decipher the candidates and clarify the information.

Fourth problem was the instruction for the absentee ballot. It indicated that you were supposed to place your ballot inside of an envelope then place in a larger envelope to mail. Well, my package contained no small envelope for me to place my ballot in. So, I called the DeKalb County Voter Registration Office and was told that I could still mail my ballot anyway. I had also participated in a voting conference call that talked about a sleeve to place your ballot in but I don’t remember seeing a sleeve in my package either.

Fifth problem was  difficulty verifying information about when to mail the ballot. I got a text message on Sunday, two days before voting day, asking me questions about whether I was going to vote or not. I responded saying that I was voting absentee and would mail my ballot. I was told not to do that but take to a drop box. Well, I had no transportation to a drop box due to my disability. I tried to look online to learn about the policy on when an absentee ballot should be received but had no luck. On Monday morning, I called the DeKalb County Voter Registration Office again and was told as long as it was postmarked by election day I was good. I later checked the Georgia My Voter Page website to track my absentee ballot and saw it was received.

The sixth problem was the inaccessibility of the absentee voting process; but of course, I already knew that. fortunately, I was able to get a sighted friend that I trusted to come over, mark my ballot and mail it for me. This whole process  was stressful and taxing. But because I believe in our democracy and the power of the vote I did and will continue to persevere.

So now next steps. November is right around the corner. What is my game plan to avoid all these problems for the next election; and in my opinion, the most important one, voting for the President of the United States. The medical experts say the coronavirus will still be with us and might be worse as November will be in the fall and right during the flu season. So absentee voting will probably be my best option again. I have definitely learned some powerful lessons about this process. I am going to arm myself with more knowledge about absentee voting, share that info with friends and family, and continue to rely on trustworthy people. So, what’s your game plan for November? Do you plan on voting in person or by mail? Share your thoughts on the voting process with me as we prepare for the Presidential election.

celebrating -gaad-2020 Logo

GAAD and My Daily Access to the Internet

Today is Global Accessibility Awareness Day (GAAD). According to their website, every person that accesses the Internet deserves a first-rate digital experience. Someone with a disability must be able to experience web-based services, content and other digital products with the same successful outcome as those without disabilities. This awareness and commitment to inclusion is the goal of GAAD.  This event was launched 9 years ago based on a single blog post that challenged web developers and designers to dig deeper on the accessibility of their web content. Unfortunately, equal access to the Internet is not always available.   This year one million webpages were analyzed for accessibility and came up lacking.  Some of the issues were low contrast, no alt text for images, empty links, and missing form input labels. These issues and more all impact the ability  of those with disabilities to access information on the Internet.

Every day I spend the bulk of my time online. As a result, I come across inaccessible websites on a regular basis.  Just this week I was trying to register my all in one printer with the manufacturer and portions of that process were not accessible with my screen reader. When I called customer service, I was told that they could not assist me and that I had to complete the process on my own; but yet the website is not accessible. I have heard this all the time for many years. I have used sighted friends to help me from time to time. Yet it has been somewhat frustrating and annoying when there are probably simple fixes in the web coding that could be done to remedy the problem.  Additionally, I bump up on accessibility with mobile apps. I hear all the time about wonderful apps that can do this or that. But my question is, “Is it accessible?” If not, I don’t even bother with downloading it because it’s not going to work for me no matter how wonderful.

I have learned that I have to continue being an advocate and speak up about this issue. Many people still don’t realize that people that are blind and visually impaired are actively online. That we use adaptive technology to access the internet. Not only do I use the internet to post this blog I am writing but I live my life like everyone else. Here are some examples:

1.  Download books to read for my book club.

2.  Stream movies to watch on Netflix.

3.  Participate in Zoom videoconferencing meetings on my desktop computer.

4.  Completed my 2020 census online.

5.  order groceries  and other goods online.

Now we are in the midst of a global pandemic and it is even more critical that everyone have access to the internet. More and more people are working from home. Shopping, banking and other daily activities have increased online. School students are taking classes on their computers or tablets. Various entertainment venues are looking at moving some of their content online. So, web designers and developers need to know and understand that people with disabilities, which add up to about a billion worldwide, are online too and need equal access.

Empish at Paper Voting Machine Demo

Voting with the New Paper Ballot Machine Inaccessible

Editor’s Note:  the picture used for this post is from a voting machine demo not an actual election.

This year the process to vote changed in Georgia. For years I have voted independently by physically going into my local precinct and casting my ballot. I accomplished this by using the accessible voting machine. While sitting at the machine, I would use a headset and listen to my ballot and select my candidate with a large raised button keypad. I would confirm those selections and then give the plastic voter card to a poll worker and leave. I perform this task year after year at each election. But decisions were made that said this method of our voting system was not safe and secure because there was no paper ballot to track our votes. We needed a better system to ensure our democracy. Efforts began  and a contract was signed to select new machines; ones that would print out a paper ballot.

Research Consulting on Accessible Paper Ballot Machines

Last year in May I participated in a research project at Georgia Tech on accessible paper voting machines. I tested two different models and gave feedback on the audio quality, keypad functionality and overall ease and use of the machine. Additionally, I was told that these paper ballot machines would print the ballot but store inside for safety and security.

Now fast forward to this year. Unfortunately, the machine that I recommended along with other disabled consultants was not selected.  The new paper ballot machine that we are using to vote is not completely accessible. I am feeling some distress because my ability to remain independent and keep my vote private have been removed.

Attended New Paper Ballot Machine Demo

In February I attended a voting machine demo to educate myself on how to use this new machine. I was glad because there are a couple of steps that are different than before. The representative explained the steps one by one and then allowed us to come up and practice with a dummy ballot. The first step was having to get help with the touch screen to sign in. In the past I would give my Georgia ID to a poll worker who would fill out a paper form for me to sign. Next, I sat in front of the machine, which was much larger in size, and began to vote. The keypad was very different and it took a few minutes for my fingers to get adjusted to the buttons. The audio quality, which I have complained about to the Secretary of State’s office before, was somewhat better. But I was annoyed and distracted by the constant reminder of the color of the buttons. For example, “press the green left arrow or press the blue down arrow, etc. I was confused by the insistence of telling me the color of the buttons when I am blind and can’t see them. I just found this very distracting and, in some ways, it hindered my ability to vote. But I pushed through and continued on with the process.

Once I got to the end, I confirmed my selections and press the option to print my ballot. Now this is where the accessibility issue crops up. The machine printed out a large piece of heavy stock paper that I couldn’t see. I was not able to confirm that this paper had the candidate that I selected. All the other people in the room were sighted and could stand there and confirm their selection on their paper ballot but I was not able to do so. I was told by a poll worker that they could do it for me or I could bring someone with me on election day. I inwardly frowned and bristled at both of those options because for years I have always voted independently. Also, my privacy is now gone if I allow another person to see and read my marked ballot. Those of us in the blind community have fought for so long on this issue and now it seems we are right back where we started. Yet I wasn’t finished voting. The poll worker walked me over to another machine where we placed my ballot face down and inserted it inside. Once we heard the click sound my ballot was truly cast. I left this demo with mixed feelings. On one hand I was glad for the instruction but on the other I now realized some of my independence was gone.

The Actual Voting Day

During the March presidential primary, I decided to early vote. I was anticipating all kinds of issues with the new voting machine and I wanted to avoid them as much as possible. The coronavirus was just hitting Georgia and we had not started sheltering in place or practicing social distancing yet. No facemask or gloves either. I walked in, got set up and started the voting process. I told the poll worker I was already familiar with the new machine and knew what to do. Once I finished voting the paper ballot printed out and the poll worker came over to ask if I needed help. I had been told that I could use accessible scanning apps on my smartphone but declined that option. I barely use those apps on a regular basis and would be fumbling around trying to do that. Since the ballot was a short one with few candidates, I opted for the poll worker to confirm my selections. She did and walked me over to the other machine to actually cast my ballot.

Now it’s time to vote again. The coronavirus has caused the elections for the general primary and presidential preference primary that was to be in May to now be moved to June. I am wondering do I go to the polls again or do an absentee ballot. Both options look rather bleak and inaccessible for me.  If I go to the polls, I will have to wear a facemask and gloves and risk possible exposure to the virus. Also, I will have to deal with the inaccessible paper ballot machine situation. If I do absentee ballot, I can stay at home but have to get a sighted person to read my ballot; losing my privacy and independence there as well. It seems either way I really don’t win completely when it comes to voting and accessibility.

Continue reading Voting with the New Paper Ballot Machine Inaccessible
Empish Writing a Check

Annoyance Leads to Advocacy in Accessing Mobile Banking Apps

in January I decided to start depositing my checks from my freelance work through mobile banking. Up to this point I was going into my local branch and making those deposits bimonthly. But it was time for change, to stretch myself and learn something new. In the past I did very little financial transactions on my smartphone and was not familiar with mobile banking. Flicking, swiping and tapping on apps is just not my thing especially when it comes to dealing with money. But after downloading the bank’s app, I found it rather simple and straightforward. I got excited thinking this was going to be easy and that I should have done this a long time ago but I soon realized I was wrong.

After logging in, I went to my account and selected the “deposit a check” option. I had already written that information on the back of the check and got it ready for the camera. This is when the challenges began. The first problem was that the part where you type in the deposit amount did not speak with Voiceover Command. Voiceover is the accessible feature in my iPhone that allows me to use my phone since I am blind. As a result, I had no idea of what amount I was typing in the box until I went to the next screen only to discover that I typed the amount in wrong. I went back to the screen and typed in the correct amount. This is a major problem because you need to know if you are depositing one dollar or multiple dollars. Once I got that corrected, I tapped the button to take a picture of the front of my check and tried to position the camera. But I kept getting errors telling me to place the check on a dark background and/or add light.

Feeling very annoyed and frustrated  with this I called the bank on my landline and worked with a representative in the mobile banking department. She gave some tips for the scanning of the check which I followed but it still didn’t work. I told her I would have a sighted friend to assist me and follow up. When my sighted friend came to help, she saw the issues that I was having and agreed with me that the app had some accessibility problems. She told me that there was enough light and the check was laying on a dark background so she was perplexed about the errors. We both finally gave up and I turned off Voiceover and let her deposit the check on my behalf.

 

 

Empish Using an iPhone

 

The next time I got paid I tried again and got the same error messages. But this time we are deep in the midst of the coronavirus and my bank has closed the lobby except for appointments only and drive thru.  So, I made an appointment and saw the branch manager who watched me try yet again to deposit this check. He observed the inability to hear the dollar amount and agreed with me. He also saw how the error messages kept popping up about the dark background and lack of light. He reassured me that there was plenty of light in his office and that his desk was dark. so, he was puzzled why the app was giving that kind of message. After several attempts I gave up and had him deposit my check.

When this problem occurred in January, I filed a complaint immediately with the mobile banking department. They responded too fast to tell me that the app was accessible. I was very annoyed and irritated because I knew that was not true. After 20 years of blindness I have gotten replies like this before where people quickly tell me that things are accessible to the blind when they are not. I have learned to push back and use my advocacy skills. I explained to the mobile banking department that I couldn’t hear the dollar amount and there were problems with scanning the check. I also shared that there are buttons on the scanning screen that don’t respond when Voiceover is turned on. I told them that I even went into a branch and worked with a bank employee who saw me try and use the app and saw that it wasn’t working properly. I even went as far to ask did they ever have blind or visually impaired people help test the app before they launched it?

Not to be outdone, I even tried my credit union’s mobile app and had similar problems too. I was able to hear the dollar amount but again the scanning process for the check didn’t work. After all of this you might be thinking, “Maybe something is wrong with your iPhone?” Well, I thought that too. But my iPhone is only a year old. It is a fairly new model and has the latest software downloaded on it. I also reached out to Apple disability tech support and did a screen share to look at my camera settings. I explained to them the problems I was having with mobile banking and they reassured me that the issue was not with my phone.

So, what happens now? Good question. It is the end of April and I am still working on my complaint with the bank but in the meantime, I am using Lyft to ride and go through the drive thru. Just this week I left my home wearing a facemask and gloves riding in a Lyft car to the bank.  I am also continuing to talk with my freelance client about electronic payment alternatives. As a contract employee I have shared my struggles with getting to the bank and my concerns especially that we are in the midst of a pandemic. They have heard me and other freelancers and are working on a better solution.

I believe in advocacy and speaking up for myself. Even if I don’t get an immediate resolution to my problem my voice has been heard. It can be frustrating, annoying and exhausting but there is power in speaking up and speaking out.

 

Making Peace with My Lack of Sleep

Empish Yawning
Empish Yawning

This week, March 3-9, is National Sleep Awareness Week. The Sleep Health Foundation contends that sleep is the third pillar of health, alongside diet and exercise. I would strongly agree because for the last 14 years I have battled with a sleeping disorder.  Like so many others I took my sleeping for granted but now I realize how essential sleeping is to my overall quality of life.

In 2006 I began to have severe sleeping problems. For years I had always been a good sleeper. Going to bed at the same time each night and rising around the same time in the morning. Even taking a long nap during the day did not negatively impact my ability to get a good night sleep. But something shifted and I began a long and stressful battle with sleeping. At first, I thought it was just stress from normal life challenges. My schedule at work had changed. I was freelance writing on the side. My roommate had just moved out. A romantic relationship had just ended. So, I naturally thought that just the everyday things of life were causing me to not sleep well. But my lack of sleep persisted to the point I was not sleeping at all. Many nights I had difficulty falling asleep and would just lay in the bed for hours wide awake and feeling stressed. Other nights I would fall asleep with no problem but could not stay a sleep. I would wake up from the slightest noise or to go to the bathroom and then I could never get back to sleep. Other nights I just couldn’t sleep at all and would literally stay up for 24 hours. And lastly, this impacted me during the day, where I would nod off at my work desk or doze on the bus.

At first, I tried over-the-counter sleep aids. I tried nature relaxation music. I tried drinking warm teas and taking warm showers. None of these remedies worked. Something was majorly wrong with me and I needed to seek medical attention. First, I went to see my primary care physician and he immediately thought I had sleep apnea. He gave me a referral to a sleep doctor for follow up. When I saw the sleep doctor she agreed and scheduled me for a sleep test. I spent the night in a lab while they monitored my sleeping. In addition, they monitored my breathing, heart rate, any body movements and probably other things I can’t remember! The results showed that I had Sleep Apnea. I had episodes where I had woken up several times from lack of breathing. I was given a prescription for a CPAP machine. But this device never worked and something in the back of my mind told me that this was not the true cause of my severe sleeping problem. I shared this concerned with my sleep doctor but since the lab results showed sleep apnea there was not much she could say. I shared my worries with friends, family and co-workers; expressing that the CPap machine was not helping me. Some nights I felt worse after using the machine than before.

Sleeping Problems and Blindness

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Empish Sleeping
Empish Sleeping

At one point I came across some information on sleeping disorders and people with disabilities. I had never taken my blindness into consideration with my sleeping problems. A friend told me that since people who are totally blind can’t see sunlight, their bodies could not tell it was time for sleep. A local vision rehab center was doing a workshop for people with total blindness who were experiencing sleeping problems. I went and learned that my poor sleeping might be due to the fact I was totally blind and not to sleep apnea as originally thought. I began to do more research and have more conversation with people about this. I even went back to my sleep doctor to discuss the possibility. She said that was something new that she was not aware of and would look into it. But in the meantime, I continued unsuccessfully to use the CPAP machine. After multiple fits and starts, I finally gave up on that darn machine! I had become a bit depressed but also resolved that this just might be my life and to get over it. But a friend told me about a governmental clinical trial. They were looking for people who were totally blind, had no light perception and were having problems with sleeping. Well that sounded like me, right? I contacted the researcher and signed up. For two years I provided saliva samples about once a month to the Oregon State University Sleep Lab. They analyzed my samples and discovered that my circadian sleep rhythm was all over the chart. I would do well for a time and move over to the left. Then I would do well for a time and move all the way over to the right. Basically, I was zigging and zagging all over the medical chart. They found this interesting and asked me to sample more often and stay with the study a little longer. I agreed. At this point in my life I was feeling tired, depressed and desperate for a clear diagnosis of what was wrong with me. So, I was willing to persevere to get to a solution. I also wore a sleep watch and provided any changes in my health, eating or exercise routines. I told my PCP about the clinical trial and that I had stopped using the CPAP machine. He ordered another sleep test and it was discovered that I really did not have sleep apnea after all. The lab results showed that I did not have enough breathing episodes to warrant the condition.

At the end of the sampling, the researchers told me I had non-24 hour sleep wake disorder. This is a serious, chronic circadian rhythm disorder that affects a large majority of people who are totally blind. They had discovered that my internal body clock had gotten off track and felt it was because of my blindness. At some point in those first years of poor sleeping, I must have lost all light perception which explained why for years I had good quality sleep and then in 2006 things changed. They told me there was no cure but I could take very small amounts of over-the-counter melatonin an hour or two before bedtime. The important thing was to stay on a good sleep routine. I was saddened there was no cure but relieved that I had a diagnosis and some medication I could take. I decided to make peace with my situation and just continue to do the best I could. I decided to not get stressed about it anymore. To not be depressed about it anymore. To sleep to the best of my ability.

Then in 2010, I heard about the research that Vanda Pharmaceuticals was doing. They were working on developing a medication that would help remedy this problem. Well, they did just that and in 2014 they were given FDA approval for the drug call Hetlioz.  I have been on this medication ever since and it has greatly improved my sleeping. Again, it is not a cure and my sleeping is not like it used to be nor is it perfect. I still have moements when I don’t sleep through the night. I still have moments when I wake up and can’t fall back to sleep. But I have better sleep than before and more importantly I have made peace with my sleeping disorder.

Before you nod off, let’s  talk. do you have problems with sleeping or sleep wake disorder? What is your sleep regiment ? What things do you do to make peace with your lack of sleep? Join the conversation and let’s chat about sleeping disorders and blindness.