By Rosemary Musachio

Although I’ve been communicating with a manual communication board with letters and words since I was eight, speech therapists have been trying to help me use electronic augmentative assistive communication (AAC) devices.  I had never been thrilled with the idea until recently.

Back in the 1980’s, AAC devices had robotic sounding voices that some people couldn’t even understand.  The voice made me sound like a teenager from outer space.  Now synthesized voices are much more human sounding.  Some voices actually would make me sound as I should sound—a sexy woman speaking.

Additionally, since the idea was to use the AAC device away from home, I didn’t (and still don’t) want to use the headpointer out in public for aesthetic reasons (Wearing a helmet with a protruding stick makes me look like I belong in Star Wars!).  So, I used my thumb knuckle, which I use to point on my manual communication board, to access buttons on the first AAC device I tried when I was in grade school.  When I targeted a single button, I pressed several others with the rest of my hand.

The idea of AAC devices went on the back burner until I started attending college.  Since I didn’t have aides as I did in grade and high school to voice what I pointed to on my manual board, I had to find a way to communicate independently.  The Cleveland Hearing and Speech Center set me up with a Light Talker.  Each button on the device could be activated with an infrared light.  Because I couldn’t hold and manipulate the infrared light pointer, a rehab engineer created an iron-like object that I would drag across the surface and stop at the icon I wanted.  Tapping two picture icons were required to say a phrase.  For instance, I had to activate the SUN icon and the ELEPHANT icon to say, “I’m happy to meet you.”  The Light Talker required users to have photographic minds to memorize all those combinations. 

Often the Light Talker stopped working, sometimes in the middle of my forming a sentence.  I would look helplessly at my listener until he or she finally understood that the stupid thing died.  This would also happen when the plug came out of the pointing device.  I used the Light Talker only at school, not at home.  Therefore, my manual communication device still was more effective for my personal interactions. 

Over the years I’ve tried other AAC devices without avail.  I tried scanning where the cursor goes through words or letters.  When I wanted to select something, I’d hit a button with my hand so the cursor would stop on an item.  Stephen Hawkins uses this method to communicate and operate the computer.  Scanning is not for me, however.  Either the cursor went too slow that I would forget what I was trying to say in the first place, or it went too fast so I felt like Lucille Ball, working on an assembly line in an “I Love Lucy” episode.

I’ve also tried the eye gaze method.  I became excited about it because I assumed it was easy to use.  I mean, you stare at an item to activate it through infrared.  Well, it isn’t that simple.  Your eyes have to be calibrated first.  In other words, the device has a camera that takes an image of your iris position so it knows where the infrared light is reflected.  If you move your head a lot—as mine usually does–the device continues to recalibrate, causing you not to activate the correct item.  Besides not keeping my head steady, I also have one lazy eye that made calibration difficult.  Consequently, practicing to use the eye gaze device made me frustrated and tired.  Nevertheless, new eye gaze systems have been developed that supposedly improve calibration.  I still may try one soon.

Currently, I’m trying the “dot” system on a ChatFusion device.  This device still uses infrared.  Instead of using my eyes to activate the device, I use an adhesive dot.  You can stick the dot anywhere on your body that has the most control and best target position to activate buttons on ChatFusion.  I stick it between my eyes since that position allows me to follow the cursor on the screen in relations to my head movement.  If I wrinkle my nose, my target range becomes skewed.

Unlike the other devices I’ve used, ChatFusion using the infrared dot has worked so far.  Head movements do not have to be calibrated constantly like eye gaze systems.  The device can be set according to how much “dwell time” you need to hover over an item to activate it.  The device—and it goes with any device—should be positioned correctly so the user can access any item on the screen.  For example, if I sit too close, I may not be able to target items at the bottom of the screen well.

ChatFusion works better also because I’m investing more practice time.  Practicing with someone who I can use the device with to converse engages my attention more than practicing alone.  During my practice sessions, I keep telling myself to relax; otherwise, my head becomes one of those bobbing toys in the back of a car.  Additionally, I become conscious of how I approach each item with each movement.  If I make the cursor slides onto an item from the bottom rather than targeting it in the middle, my head is steadier.  The downside is that I may activate other items that I don’t want in the process.

Learning to use an augmentative device takes patience and practice.  You need to pace yourself.  If you get too tired or frustrated, you need to stop and restart at another time.  After 30 minutes using ChatFusion—or any other AAC device—I start losing concentration and my head movements become more random.  At this point, I even compose sentences like someone from another planet.

Clearly, my attitude towards electronic AAC devices has changed.  Since AAC technology has advanced from 1970’s, I know I will be using a device that will allow me to communicate independently in business and social situations.  It may not be Chatfusion; it may be a better eye gaze system or even a brainwave AAC.  Once I find the right AAC device and access method, I probably won’t stop talking.

Ruh Global Communications, an international leader in strategic disability inclusion and accessibly policies, programs and marketing, announced that it has named Rosemary Musachio as Chief Accessibility Officer (CAO).  With over fifteen years in the arena of electronic and Information technology (E&IT) accessibility, Miss Musachio will manage internal and external accessibility projects.  She will ensure that accessibility best practices will be followed within the company and help clients meet their accessibility needs, including website and product accessibility.  Additionally, she will consult on accessibility and inclusion issues that clients face from the employee to the customer level.  Prior to this new position, Miss Musachio was the company’s Chief Strategy Officer.

“Every business needs to include accessibility in its fabric to become stronger.  Otherwise, it will rip and create big gaps,” Miss Musachio explains.  “Making every aspect of a company accessible and inclusive increases productivity, embraces diversity with common goals, and promotes more of a positive image to the public.  Since I have cerebral palsy, I bring a personal perspective to my role as CAO.  I know what a company needs to do for employees with disabilities to feel accepted and purposeful, and what a business must do to serve customers with disabilities with consideration and respect.”

“Honored to promote Rosemary Musachio as our Chief Accessibility Officer (CAO). She has been in the ICT Accessibility field for over 16 years.  She has worked with national and multi-national corporations, non-profits, agencies and organizations all over the world,” says Debra Ruh, Ruh Global Communications, CEO.  “Rosemary represents everything we want to achieve in the field.  She is a talented technologist, college graduate, tester, user of Assistive Technology (AT), published author, poet, person with Cerebral Palsy (CP) and undisputed global expert in ICT accessibility.  This woman is changing the world with her talents and we are extremely proud of her.”

About Rosemary Musachio

Since 2001, Rosemary Musachio has been well versed in the accessibility realm.  She has been an accessibility analyst and training manager.  She has worked with a number of major cooperate clients on accessibility projects and has written numerous blogs on the topic.  Before Rosemary entered the accessibility industry, she was a local monthly columnist and freelance writer.  She also edited and published resource newsletters for persons with disabilities.

 About Ruh Global Communications:

Founded in March 2013, Ruh Global Communications is a strategic digital marketing firm that helps businesses and government entities include persons with disabilities within every level of an infrastructure, from interviewing and hiring to job training and retention.  We help countries implement of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD).  We also work with national and multi-national firms to help them include persons with disabilities in their workforce and developing accessibility and social media programs, providing outreach and training, and helping companies procure assistive technology.  Ruh Global has presented at conferences throughout the world about accessibility and disability inclusion.

For further information, please visit us at www.ruhglobal.com , and follow us on Twitter: @RuhGlobal  or @DebraRuh. or call: +1 (804) 986-4500

Press Contact:

Debra Ruh, CEO
Ruh Global Communications
18122 Vontay Rd.
Rockville, VA 23146, USA
(804) 986-4500
Debra@RuhGlobal.com
www.RuhGlobal.com

Growing up with spinal muscular atrophy, a genetic neuromuscular disease that affects all muscles of the body, can bring social challenges for anyone.  For Alice Wong, the challenges made her angry.  Rather than the anger becoming a negative impact on her adult life, she has been able to utilize it to fight for her rights and those of others with disabilities.

As she wrote in her essay Hey, Angry Girl, Alice faced a lot of attitudinal barriers while she was growing up in Indianapolis, Indiana.  Besides the usual stares and naïve questions from people, she also faced barriers in her education.  For instance, to complete her second year drama class, one of the requirements was to do a skit that required physical action.  The professor insisted it had to be done standing up, which Alice couldn’t do.  So she had to forego it.

Attending the University of California, Alice discovered ways to break down barriers that she had encountered during her youth and still was facing.  Works of disability activists and researchers such as Paul Longmore, Irving Zola, Erving Goffman, and others inspired Alice to express her ideas and voice her frustration through writing and research.  Her writings have helped people with disabilities to live as independent as possible.

For instance, Alice is the Staff Research Associate for the Community Policy Living Center at the University of California where she authors curricula for the College of Personal Assistance and Caregiving and producing reports on Olmstead-related legislation and lawsuits.  In fact, Alice is the co-author of several online courses on personal assistance care, which can be found at Direct Course Online.  She’s also the founder of the Facebook group “Self-Directed Care Discussion Group”, where members can voice their concerns and ask questions about personal assistance issues.

Besides personal care assistance, Alice also has motivated other persons with disabilities to make their voices heard.  She has launched the Disability Visibility Project, a blog-like platform so persons with disabilities can write about their challenges and successes.  These stories make our voices heard, act as a historical resource, and illustrate their diversity.  As with the Facebook personal assistance group, she also utilizes Twitter to encourage them to discuss issues that concerns the disability community.  Hopefully, agency or government officials notice these discussions and act upon what needs to be done to ensure our basic rights as humans.

Alice also promotes social media accessibility as a council member of the National Council of Disability (NCD).  In 2014, she co-moderated a series of online dialogues to discuss how social media platforms can become more accessible, such as users adding text alternatives to images and including correct captions for videos.   “{O}ne of my advocacy efforts is through community-building efforts on social media such as Facebook and Twitter,” Alice says. “I’ve come across some amazing people with disabilities all over the world and we share our experiences that seem to be universal.”

As an avid advocate for persons with disabilities, Alice offers three bits of advice.  First, don’t consider yourself the problem.  Society creates most of the barriers that you need to overcome.  Second, reach out to other persons with disabilities who have experienced similar situations that you do for guidance and mentoring.  Third, share your struggles and successes with others who may need help.

Alice turned her anger as a little girl into something positive as a woman—her passion and desire to help others with disabilities.

Follow Alice on Twitter at @SFdirewolf.

Several years ago I asked my mom’s gynecologist if she could give me a routine pelvic examination.  She said she would have to put me under anesthesia to perform the exam because my cerebral palsy would not allow my body to hold still.  Although her reply was cordial, it made me feel demeaned, as if I was a second-class citizen.   Couldn’t she have her medical assistant hold my legs while she examined me?  In fact, that would have been a reasonable accommodation under the Americans with Disabilities Act (ADA).

This is the kind of treatment that women with disabilities usually face regarding their health care.  According to the Center for Research on Women with Disabilities (CROWD), we have more difficulty obtaining health care than non-disabled women.  The National Study of Women with Physical Disabilities supports this, stating that we are less likely to have pelvic exams than women without disabilities.

Besides attitudinal barriers, we also face physical obstacles in doctors’ offices and hospitals.  For example, when I get a mammogram, I have to become a contortionist.  I have to put one arm upright leaning against the mammography unit, hang on to the bar with the other hand, and rest my uplifted chin against the front of the machine.  Include the fact that my body has difficulty keeping still and this almost pain-free routine exam becomes a very uncomfortable feat.  Not only am I nervous about the mammogram results, I’m also afraid that I’ll bump my face against the machine.  My incidents are not unique.  Cases exist where women with disabilities were duct taped to mammography machines.  Besides the discomfort, an inaccessible mammography machine may cause unreadable x-ray images, for the patient may move and cause one or both breasts not to be x-rayed correctly.  Consequently, potential tumors may be overlooked.

Struggles that women with disabilities face regarding healthcare stems from several reasons.  (These reasons also can pertain to men with disabilities.)  First, many medical professionals are ignorant of who we really are.  Some think we must be asexual.  Because we cannot walk or we have muscle spasms, they assume we also cannot use our bodies to love others or procreate.  So they think our intimate organs do not need preventative or medical care. Some doctors suggest hysterectomies to eliminate the hassle of menstrual cycles, assuming we don’t have the desire to become mothers. If we get breast cancer, we may not be offered reconstructive surgery because many doctors don’t see us as having female bodies but as having disabled ones.

Lack of training also contributes to health care issues for us.  Take the GYN incident above.  If the doctor knew how to give an exam to a woman with cerebral palsy, she wouldn’t have suggested the anesthesia or refused medical care.  Medical professionals should know how to gently stretch a woman’s legs if they are spastic or place a woman with spinal conditions in comfortable positions during an exam.  These techniques should be taught in medical school.  The patient also could inform the medical professional about ways to make her feel comfortable and relaxed as possible while she is being examined.

Financial issues and logistics are other obstacles that women with disabilities have to overcome to receive proper healthcare.  Many women with disabilities are on Medicaid and Medicare, which deters physicians from accepting their cases.  CROWD reports that even if women with disabilities have private insurance, many insurance companies may not pay for specific prescriptions, procedures, therapies, or assistive devices.  As an example, insurance may not pay for estrogen therapy because it is not considered a medical necessity.

Although Title II and Title III of the ADA require medical facilities to have accessible medical equipment, many still are not complying.  It is like a double-edged sword.  Hospitals and doctors may not invest in such equipment because patients with disabilities are few, while we don’t go to these facilities because they lack accommodations.  An accessible gynecological exam table, for instance, that can be lowered for easy wheelchair transfers costs between $4,000 and $10,000.  While this is expensive, it can be offset with tax incentives.

27 million women in this country and 16% of the world’s women have some kind of disability.  As populations become older and live longer, many other women will develop debilitating conditions.  Medical facilities and professionals need to realize women with disabilities are not in the minority.  More importantly, they must know that we are needed as daughters, sisters, friends, wives, mothers, and productive members of society.  So proper healthcare is vital to help us continue fulfilling these roles.

Yet, the responsibility of obtaining health care also lies with us.  We should tell doctors, medical assistants, and nurses how they could assist us in receiving the best care possible.  If they refuse to comply, then we should seek legal or other public action to ensure that all women with disabilities get the care that they deserve.