How much do you know about cerebral palsy (CP)? How much do you know about the people who live with this condition? What can they do? Are they “like us”? How do they function and does technology improve their ability to function?
I recently joined my daughter to watch a movie from 1989 (that is 24 years ago!), “My Left Foot: The Story of Christy Brown” staring the amazingly talented Daniel Day-Lewis. It is the story of Christy Brown, who was born with cerebral palsy and learned by himself to paint and write with his only controllable limb, his left foot. This is a story of a dedicated mother, who never saw her child as other that a brilliant person who can do anything he wanted in his life and taught her other kids to do the same. This is also a story of an ignorant and indifferent society, a society that expects all people to be the same and refuses to acknowledge that someone can be equal to them but at the same time different. In this story, the mother did whatever she could to provide her son with the mental and physical tools to survive in the society he was brought into.
The following definition was taken from MyChild at http://cerebralpalsy.org: “Cerebral Palsy is caused by a brain injury or by abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth. It affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.”
Knowing all that will put in perspective the challenge that we face with technology to develop computer programs and hardware that make it easier for people with CP and other disabilities to get around on their own and communicate effectively with others. These technologies are called Assistive Technology (AT). AT allows people with CP to write, speak, find information, or control their environment. In the movie, Christy Brown was introduced to a doctor only when he turned 19. With the doctor’s help he became more articulate with his speech and was able to better control his body movement. These techniques enhanced his ability to express himself and to make others understand what he was going through in his day-to-day life.
The AT available today for people with CP includes electronic communication boards that provide an incredible amount of symbols to choose from, broken down into many different categories for everyday life situations and activities for different age groups. These devices can go even further and speak phrases or sentences so that the person with CP can converse with others. These devices are known as augmentative and alternative communication (AAC) devices. Depending on the severity of the CP, they can allow the user to touch the screen or use a computer mouse to choose the words and phrases they wish to speak, or to use switches to highlight and choose a particular sentence or paragraph of words to be read by the device. Switches can come in the form of a button, foot pedal, or a mouth-operated switch. There are also cameras that allow people with CP to translate eye movements and blinks into computer input.
Unlike Christy Brown in “My Left Foot”, I was introduced to AT, as low-tech as it was at the time, when I was five. My speech therapist made an E-tran chart. It was my first method of communication with the world. The layout of the E-tran chart was based on my lack of pointing ability. It had six groups of letters and numbers, with each group having seven characters. Each group had a big letter on top and smaller letters below it. Spelling a word required that I position my hand where each letter was in the group. To spell “cat”, for example, I would do the following:
1. Put my hand on the bottom left of the first group for “C”
2. Put my hand on the top center of the first group for “A”
3. Put my hand on the top right of the eighth group for “T”
Eventually, my speech therapist discovered that the lower knuckle of my right thumb stuck out when I made a fist, which would be a faster pointing method than the one I was using. Around this time, she also learned about Blissymbols. Created by a prison inmate in Canada, Blissymbols are like hieroglyphics but with rationales, so little kids or children with learning disabilities could remember them. Each Blissymbol has its associated word above it, allowing those unfamiliar with the system to read it as the Blissymbol user pointed to it. Blissymbols came in sheets of 100, 200, 400 and 800 symbols. It also included the alphabet so I could spell any word that wasn’t on the board. My speech therapist would cut and paste a sheet to a game board to be folded and placed in my book bag. To this day, I still use a version of the Blissymbols, only without the symbols.
When I attended Cleveland State University, I started using high-tech augmentative communication (HTAC). An HTAC device is electronic and provides synthesized voice. My HTAC device was called 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 Light Talker surface and stop at the icon I wanted. Sometimes a phrase would require two icons for the device to say it. For instance, I had to activate the “sun” icon and the “elephant” icon to say “I’m happy to meet you”. Users of Light Talker and other such devices must have photographic memory to learn all those combinations. However, I preferred and still prefer my low-tech Blissboard for a few reasons. It is much easier to use than a voice synthesizer because I just use my low thumb to point and I don’t have to remember a myriad of combinations. Eye-operated switches can be used for HTAC devices. Although I have tried these devices, they require very fine head control, which I lack.
Another good thing about the low-tech word board is that it encourages whoever I’m talking with to move closer to read the words I’m pointing to. Conversing with a person who is five feet away from me seems cold and distant. Don’t get me wrong. HTAC devices are invaluable for persons who do not have enough hand control to point to word boards or who feel they need a more powerful means to be heard. Sometimes I have had a person ignore me while I pounded on my Blissymbols board. An HTAC device also is ideal for someone who cannot talk and who needs to give a speech to a group of people. Unlike when I used the Light Talker years ago, voices of HTAC devices sound much more natural and understandable.
Persons with CP, like yours truly, are more fortunate today than Christy Brown was back then when the movie was made. Thanks to advances in assistive technology, persons with CP and other disabilities are more independent and productive; and it has made us more accepted by society.
AT is extremely important but not enough to help people with CP and other disabilities stay connected. It is equally important to ensure that Websites, Web applications, Mobile applications and software will be coded in such a way that they will be able to interact with AT, allowing people who use AT to be out there in the social media sites and to receive digital services on-line like everyone else. The World Wide Web Consortium (W3C) has set the standards for Web and digital accessibility and the Federal government has laws put in place, such as the Americans with Disabilities Act (ADA) to ensure that companies and agencies follow accessibility guidelines and practices to make their services accessible to people with disabilities.
People with CP and any other disabilities live among us; they are amazing people, smart and creative. They are here to stay and to make an impact on their own lives and on ours. Society should embrace those individuals, who can teach us so much. Assistive Technology should be more customized and available to people with CP and other disabilities. Organizations should make sure that their software, websites and web applications work well with AT and comply with accessibility standards. Doing this will enhance the lives of people with disabilities and will benefit society as a whole.