Tuesday, June 17, 2014

E-Book Access For All

by guest blogger Laurie Hoirup, author of I Can Dance: My Life with a Disability
 
Within the business world, financial success is the driving force for both concept and product design. Numbers matter and sadly, for the disability community, those numbers can have a detrimental effect upon independence and ability. Technology is a wonderful asset for both businesses and disability, making money for one while creating independence for the other. However, sometimes certain aspects of technology don't make enough money for the business world and therefore, are lost to the disability community.

E-books fall into this category; though extremely popular within the general population and, thus, a huge moneymaker for businesses, they are only accessible to a portion of the disability community - though I must admit a fairly large portion.

However, this article is about the small proportion of people with disabilities who have limited to no use of their hands or uncontrolled use and, for this reason, don't have access to e-books. Whether or not an e-book has a button to push or a touchscreen to scroll, both are inaccessible to individuals with dexterity/mobility disabilities. Individuals with cerebral palsy, quadriplegia, paralysis, amputation of their upper limbs, or severe rheumatoid arthritis are just a few examples of the types of disabilities that affect people's ability to use an e-book as they currently exist.

I fall into this category and am completely frustrated with what is available and what could be made available. I know the technology exists, either to add a jack for a micro switch, which could be positioned for access or having voice activation as an option. Both of these additional features considered to be "assistive technology," might add to the price, but if done at the development/manufacturing stage, the additional cost would be little to nothing. And, at the same time, would open up a world of reading for everyone with disabilities.

Laurie Hoirup, author of I Can Dance: My Life with a Disability
I realize that voice activation might be disturbing to some and a bit awkward for the person using it in a quiet area such as a library, an airplane or a classroom, as having to say, “turn page” out loud could certainly be disruptive. However, in many situations this option would work out just fine. On a more personal level, I have not been able to read a book on my own since my college days, some 35 years ago. Up until about 10 years ago, I would sit next to my husband, child, or friend while they were reading and have them turn my page, which was quite a nuisance for both of us. Needless to say, I stopped reading for pleasure shortly thereafter.

Though page turners exist, they are bulky, cumbersome and not at all user-friendly. Luckily for me, I have a voice-activated computer and can therefore, read things that are in electronic format, but it is difficult in terms of reading novels. I long for the luxury of sitting somewhere; my bed, my family room, or my backyard while reading a good book.

I'm sure the thought process for most would be to utilize a laptop or a NetBook, which I agree, is one form of compromise, but I have lived through a lifetime of compromise, waiting for a product to be designed that I can use it in every aspect of my life.

I am pleading with the business world; product designers and developers, manufacturers, and marketing/advertising executives to consider promoting equal access on all e-book readers. This access only involves some slight modifications with minimal cost and at the same time, will expand the world of books and magazines to many more consumers.

Life experience for people with disabilities is often limited and for many, reading a book is their only path to seeing the earth they live on, their only way to participate in a large number of life's activities, their minds eye to the larger world around them. Reading becomes a way to expand their knowledge and their imaginations.

As a final note, I would like to remind my audience that literature was meant to be read by all; not just those who can physically pick up a book, hold it, turn the pages and read the contents, but for everyone. There have been great strides made in the field of education to ensure that America overcomes illiteracy, with “No Child Left Behind.” I would like to see the same effort incorporated by the business world to make certain that physical access does not become a deterrent to the wonderful world of words, thus overcoming inaccessibility having “No Person with a Disability Left Behind.”

Have you found an accessible E-book solution? Share your thoughts in the comment section below.

Tuesday, June 10, 2014

AT Funding Success Story





As the Assistive Technology Coordinator at Central Coast Center for Independent Living, I have the unique opportunity to find AT solutions for people and make their independent living opportunities a little easier.  Sometimes it can be as simple as providing the person a
picture of Juan jose in a wheelchair in his room with his camelbak tubing showing and some hats in the background
Juan Jose Morales
phone number to call or website to visit, but most often it involves advocacy with a vendor or a managed care provider.  The biggest challenge has been to find funding solutions and devices that neither the person nor I know exist. This was the last challenge that I had with my consumer, Juan Jose Morales.

Juan Jose lives with a diagnosis of C3 Quadriplegia meaning that he has total paralysis below his neck. He needs 24 hour around the clock care including one of the most basic human needs, access to drinking water. Whenever he needs to hydrate he needs someone to provide water to him. This is easy when he has the assistance of VNAs, but very difficult when he is out at the mall, at the movies, or exploring tourist attractions such as Cannery Row.

picture of the camelback water system, a blue bag with a tube and connection device
Camelbak water delivery system
After doing some internet research, I found many devices that met his needs. We decided to focus on one device that was sold from a vendor whom we had success in working with in the past. The device was a modified camelback with a sip and puff tubing. The device held enough water for a day trip and could be mounted to his power chair.  The only problem was that we needed to find the funds to pay for it.

The device is not terribly expensive, but for someone living on a fixed and limited income it would take months of saving to be able to afford it. We had to think outside of the box. We looked into crowd-sourced funding and decided to reach out to the millions of people around the world using the internet. Crowd-sourcing is the practice of obtaining needed services, ideas, or content by soliciting contributions from a large group of people.

There are many different crowd-funding sources with different goals, missions and business models. As a nonprofit organization we decided to give modestneeds.org a try. Modest needs is a well-established site that has been around for awhile and has made a huge impact to thousands of Americans over the last twelve years.

We gathered the necessary personal documents from Juan Jose Morales, a quote from the vendor and wrote quick summary of why Jose needed the financial assistance. Within 72 hours the application was fully funded, thanks to the generosity of the donating visitors to the website. The funds were then sent to the vendor and Juan Jose received his camelbak hydration system directly from the vendor.

Juan Jose now has the ability to drink water independently wherever he is - something that he was not able to do in over 10 years! 

Do you have an AT funding success story?  Share it in the comment box below!

Tuesday, June 3, 2014

DCAD 2014 - A Day of Disability Unity, Education, Celebration... and AT!


the county of Sacramento voter registration & elections booth displays the new accessible voting machine.a woman draws on a poster that she is creating for the DCAD Rally and March.


Disability Capitol Action Day 2014 took place on May 21st in Sacramento and we thought it would be nice to share some photos from this successful and enjoyable event! 


The day started off with a Solidarity March from the Capitol Rose Garden to the West Lawn. Participants made signs to express what they thought was important for legislators and the public to consider, and then they marched all together toward the Capitol chanting with signs in tow. 

two women lead a group of people in an outdoor exercise routine. a woman holds a sign that reads, “the time is now for equality,” in front of the CA State Capitol. a lot of marching people behind her with different apparant disabilitiesDuring this time, the Annual Disability Resource Fair was open, which featured forty outdoor booths with information and resources for people with disabilities and their allies. 

a man in front of the stage with a speaker holds a sign that reads, “Support Disability Rights & Benefits.”Next up was the Education Rally on the Capitol West Steps, where a variety of speakers spoke about the important topics of the day. After the Educational Rally, music was enjoyed; provided by the “Dream Achievers,” a band of young adults who performed live music.

DCAD 2014 was truly a success and we know that next year’s celebration of the 25th anniversary of the ADA (Americans with Disabilities Act) will be even better. We hope to see you there!

a man using a power wheelchair uses the JACO robotic arm device to reach for a bottled beverage.

man from destinations mobility is talking to a woman with a cane at his resource fair booth table
a man using a wheelchair holds a wijit device attached to his spoke, which allows him to control his chair easier with less shoulder mobility.

a woman using a wheelchair holds a sign that reads, “celebrate ADA honor fellow humans with disabilities uphold the olmstead decision commit to celebrate our pride in being alive!” her small dog is also seated in the wheelchair.

a man sits in a Whill personal mobility device, which he is able to use on the grass.





Tuesday, May 27, 2014

Joe Xavier, Director of the California Department of Rehabilitation

by Nubyaan Scott, Program Coordinator

Joe Xavier is the newly appointed Director of the Department of Rehabilitation (DOR). He recently took some time to talk with us about his background, hopes for the future, and his thoughts on Assistive Technology (AT). Take a few minutes to get to know Joe; we’re sure you’ll find it an interesting read!
head shot of Joe wearing a suit and tie and pin, smiling
Joe Xavier, Director of the CA Dept of Rehabilition

Can you share a little about your background, like your education, where you grew up, and your jobs before DOR?

I came to this country as a child, seven years old; I am one of eight siblings. And, I am the only one with a disability, which happens to be blindness. I had poor vision as a toddler that grew worse, so that by my mid to late teens, it started requiring more than just eyeglasses. And, then by my late twenties, early thirties, there was no usable vision left. I grew up and came from the Azores to California, grew up on dairy farms working with my family, and participating in ranch life. I went to elementary, middle school, and high school in integrated school settings, and then went off to college. In my sophomore year of high school the Department of Rehabilitation reached out to me, and made their services known to me. I then went through in-depth services in 1982 or so, and became self-employed for fourteen years as a result of that.  And, I have spent the last sixteen years as a civil servant. I started as a supervisor over our Business Enterprises Services Field Office. Followed by four years as an auditor, if not the only, one of the first blind Auditors in the State of California. Then, three years as a Section Chief of our Business Services Section. And, the last six-plus years in an Executive capacity with the Department including Independent Living, the Specialized Services Division, and today the Director of the Department.

It’s my understanding that you didn’t speak much English when your family came to the United States. So, I was wondering whether there was any Assistive Technology that helped you to learn English.

When you say, “much English,” you’re being very kind, because I spoke no English when I came here. On the Azores the language is Portuguese, so my first language is Portuguese. And, when we came here, we landed in Sebastopol, which is just outside of Santa Rosa. There was no one who spoke Portuguese in the school that I went to; or any language that I could understand. And, for your readers, what they probably don’t know is that I’m close to 102 years old.

Nubyaan: You don’t look a day over 90!
(laughter from both)

Joe: So, being that I am fifty-four years old, this is way before Google or all of the internet access that is available. So, back then, there really was next to none of the resources that we think of today; especially, as we talk about assistive technology. So, there was not any technology that I was able to take advantage of.  Although today there is quite a bit of it that could be used for someone who is learning English as a second language.

      Is it true that you had some difficulty with school in your early years, but, then later on you excelled? And, in compound with that, was there any assistive technology that helped you to excel in school? And, by “assistive technology,” I don’t necessarily mean literal technology, the way we think of it now. When we talk to everyday consumers about it, we try to phrase it as “anything that is an addition to your life that helps you with it.” So, any kind of devices or tools.  

   Yes. And, I think that’s a good explanation. I did have a difficult time with school, and it was a language barrier. I was held back a year because of my language barrier, and then I actually skipped a year once my language caught up with me. Because I had poor eyesight during that time, playing sports was something that was very difficult to do. But, one of the things that I got to do was to play softball. And, the position that I got to play on the softball team was pitcher. And, I was the only pitcher that wore a catcher’s mask. So, you can call that in a manner of speaking, a piece of assistive technology. Which essentially allowed me to overcome the barrier of not being able to see the ball coming at me. So, in the event that it did come at my face, it would at least bang off of the mask first. So, it was pretty creative at that time for coaches and teachers, and whoever came up with the idea. I was the pitcher, I had a catcher’s mask on, and I brushed a lot of people back off of the plate. Which means they weren’t sure if they should stand in there and hit the ball or back up. It worked!

At what point in your life did you learn about assistive technology in the formal sense; the way we think about it now?

When I started in the end of junior high, beginning high school; when they actually diagnosed what the cause of my poor eyesight was. Then, I started getting exposure to assistive technology. Some of the first technology that I used was magnifiers; I had a lot of different magnifiers. I had a couple of magnifying bars that were flat on one side and beveled on the other, so that they wouldn’t distort the print too badly. You had a six-inch or a ten-inch magnifying bar, and you’d essentially slide it down the row of print on the paper. So, that was my first exposure to the various pieces of assistive technology, and it progressed increasingly from there.

What do you think was your first use of assistive technology before you really knew what that term meant?

The catcher’s mask was clearly one of those; before I would even identify that as “AT” today. One of the things that I did on the dairy farm was drive farm equipment around. One of the pieces of technology that I used to be able to keep the tractor where it needed to go was driving the tractor down the ruts. So, I literally had just developed a since of knowing when the tractor was navigating off of those ruts. That was very early on.

Are there any pieces of assistive technology that you feel helped you on your path to citizenship?

Well, becoming a citizen occurred very late in life compared to when I arrived here. So, I came here as a child at the age of seven; I didn’t become a citizen until my early twenties. So, at that time, the citizenship path was very simple for me because I had already overcome the language barrier. The technology that I was using at the time that I became a citizen was largely magnification. And, the magnification that I was using at the time was closed circuit T.V.s; what we now refer to as CCTVs. And, I started using those in 1982 or so. The first one I had was about a 9-inch little portable screen, and it grew from that into your full 14-inch platforms.

Can you tell me a little more about your relationship with the Department of Rehabilitation over time?

Achieving employment was the key and the path to independence for me. What’s unique about my experience with the Department of Rehabilitation is that two months ago I was sworn in as the Director, and I had the great honor of having present at the ceremony, the two counselors who worked with me as a consumer in the mid-seventies and early eighties. And, I think it speaks volumes to the quality of the individuals that we hire, the counselors that we have, as well as the impact that they have on the lives of the people that they work with.

What assistive technology devices do you think have helped you most during your time at the Department of Rehabilitation?

I think that the assistive technology that I’ve used has been a generational expansion. So, let me explain. When I talked about using the CCTVs and when my vision decreased to the point where those were no longer useful. They would serve as a beacon of light, in other words, I knew if they were on or off, but that was about as valuable as they were. I started moving into use of screen readers, and I started moving into use of laptops. And, then I started moving into use of electronic note takers. And, the electronic note takers evolved from very cumbersome, very archaic, to moderate, to today as I sit here talking to you, my electronic note taker is an iPhone with an app, and a Bluetooth keyboard. Each of those evolutions of technology brought an increased ability to be efficient, and, an increased reduction of the footprint that the AT takes up. So, a laptop for example has a much larger footprint, and is much heavier than an iPhone. And, of course the applications have evolved, the screen readers have evolved over time, Braille displays have evolved over time; they’ve gotten smaller, faster, and more powerful. Society as a whole, slow as it may be, has made progress to ensure that applications that are in general use, such as the Microsoft Office products, are increasingly accessible. So, it’s not a piece, as much as it is an evolution that has brought about the efficiency and effectiveness, as well as my ability to do the work that I’m doing.

Have you ever created your own assistive technology?

Oh, yeah quite a bit. So, at home I have a garage full of saws, drills, routers, all kinds of woodworking tools, and metal cutting tools. And, I am very notorious for having fashioned different ways of getting the work done. One example of that would be that quite often I would need to measure a piece of wood or metal that I’m going to cut. But, I needed it to be the length of the space that I was going to fit it into. So, I would go to Home Depot and buy a long, thin baseboard which can come in different lengths. And, using a binder clip, I could wedge that into the space that I wanted to measure, use the binder clip to slide over to the size that I wanted, take that back, lay it on the saw, lay it on the piece of wood that I was going to cut, and cut it. That’s just an example of an assistive technology. I do a lot of electrical work around the house. And, one of the things that you really need to be aware of when you’re doing electrical work is the distinction between a black wire and a white wire. What I would do is get a piece of electrical tape, and once I identified which the black wire was, I would put that piece of tape around that black wire. Then, when I went to wire, unwire, or rewire, I didn’t need sighted assistance to identify the colors of the wires because they were already marked. So, each of those types of things, in effect becomes a piece of technology. If you step back and think about it, the purpose is to overcome a barrier. My barrier was the ability to see the color of the wire, so the piece of tape on the wire overcame that barrier.

What role do you think assistive technology plays in the services that the Department of Rehabilitation provides to its consumers?

I think the role that the assistive technology plays is largely, if not wholly driven by the individual. The Department is in a position, and has the practice of providing the assistive technology that is necessary for each individual to accomplish their plan for employment.  However, it’s what the individual does with the assistive technology that will make the difference. Providing it is just a small part of that equation.  Too often, individuals expect to get a piece of technology, and that it will solve all of the needs that they have. The technology will not solve those needs; it’s the use of the technology that will solve those needs. And, as it is with anything that we want to be good at, we need to invest time in it. And, I have invested a considerable amount of time learning the nuances, the practical and the difficult tasks of whether it’s a software application, or whether it’s a piece of hardware that I need to learn how to use.  And, for technology to be effective, we also as individuals have to understand that what’s at hand today is what you get to use, and while it may improve tomorrow , if you keep waiting for tomorrow, you will be waiting a long time. Because, technology is not perfection; it’s progress.  If you think about the description that I provided, in terms of the evolution from desktop to laptop, to note takers, etc., that’s all progress, not perfection. The iPhone and the iPad today are not perfection compared to what we’ll see a couple of years from now. I think it’s reasonable to conclude that more and more of the “mainstream technology,” will be fitted or created in such a way that meets the disability needs of many. And, the iPhone is a classic example of that. Built into every single iPhone is now a screen reader, magnification software, and other pieces of software that will provide beneficial use for the deaf and hard-of-hearing population. There are also pieces built into the iPhone that will provide assisted use for individuals with mobility dexterity and cognitive disabilities. And, I think as that grows, where technology will embrace that diverse user approach, then there will be less of a need for the after-the-fact modification, because those are being thought of and built-in upfront. Society grows, technology advances, and successful companies continue to do the same.

What do you hope for the future of assistive technology?

The ideal for me would be that there is no need for it. That both in society and in just general practice, that we have come to a point where the functional, operational requirements of individuals with disabilities is so integrated that we no longer think of it as assistive technology. At the end of the day when we talk about equality, we truly will have achieved equality when we don’t need to call out assistive technology, or physical access, or programmatic access; it’s there.

I think it’s safe to say that every leader has their own style of leading. What do you hope to bring to the Department of Rehabilitation, as its new leader?

Well, what I can share with you are some of the things that I bring to my everyday responsibilities. Ensuring that what we do is very clearly focused on that end-result, on the purpose, the outcomes for which we exist. The inclusion of stakeholder and community in a meaningful collaborative partnership in informing our practices, our policies, and our services. Ensuring that we have both the management and the leadership in place that has the depth of understanding and the experience and the breadth of appreciation to blend the needs of our community, of our programs, with the functions of government, unite them, and point them in the same direction. And, of course as it is with any organization, the responsible and responsive allocation of the existing resources that we have, that is done in a way that is equitable, and that does the greatest good for the greatest number of people.  And, recognizing that we don’t have either enough money or enough people, but that we must continue to find ways to do better with the resources that we are given.