Personal Stories

Wordle: AutoAutoAuto Wordcloud of participants' responses You have arrived at the most important part of this website – the personal stories of individuals with developmental disabilities and family members, commenting on how the use of smartphones, tablets and social media increase their autonomy.

Without any question, the inspiration for my curiosity about this topic came from several conversations I’ve had with Darwin Vaught, a retired disability services agency administrator. He started working in institutions when he was 17 years old, and had a disability services career that lasted 41 years. He spent most of his working life as a behavioralist and supervisor. In his last position he worked closely with 12 adults with multiple developmental disabilities. Most of them had difficulty speaking.

The agency where Darwin worked had purchased smartphones for staff members to more efficiently coordinate medical records, programs, accountability, and schedules. Residents at the facility – all people with developmental disabilities – saw the devices being used and recognized them as being something important. Darwin and the agency president raised money and purchased 12 devices for the residents to use. Once that happened, he said . . .

“ . . . it has been a very astonishing and humbling experience every day. New avenues of self-expression (calling, texting, recording sounds and music, using symbols and pictures to communicate and inform others of their interests, immediate thoughts, opportunities and needs); expanding immediate connections with one’s social support network, family, friends and paid supports; developing connections to share joys and issues with; and more.

“I love witnessing the pride people with disabilities feel when they recognize they’re just like everyone else with a device in their hand, or as they find new things that inspire them to learn and be very proud of themselves. We’re just beginning to realize the amazing and humbling potential (and, paradoxically, the historic painful neglect and abuse) for the personal self-direction and social inclusion these accessible tools can provide, and believe it should be a basic accommodation.

“We feel the Apples, MSNs and Googles of the world will likely recognize the potential for a new underdeveloped market and maybe invest in a morally right thing to do. We really want to connect, share, learn, and welcome everyone. Imagine the possibilities for mutual learning and full inclusion!” Darwin had several remarkable observations regarding positive change in the individuals’ autonomy and their engagement in the world around them:

  • Jacob used a wheelchair and was pushed by an attendant. All of his first pictures were of the backs of people’s heads (which is what he mostly saw in his daily life, following behind others). Later, he started taking pictures of the faces of people around him and looking at those pictures as he was moved from place to place.
  • Angela could say 10 words. She used her iPad to learn to draw, paint, and write her name. Her artwork was mostly of trees.
  • Cheryl liked to create brief videos about exploring and learning about the community. When she used FaceTime, she shared her real thoughts more honestly when she was sitting in her favorite chair.
  • Bryan mostly wanted to make “selfie” pictures of himself with others in the picture.
  • It was difficult for others to understand John’s speech. At an 8 a.m. speech therapy session he programmed his new device to say, “Hello. My name is John. What is your name? Would you like to have lunch with me?” He played the device for a woman at her 10 a.m. speech therapy session. They had lunch together that day.
  • Thomas took lots of pictures of textures and geometric shapes.
  • Young men liked to take pictures of young women smiling and laughing.
  • Sara sent pictures to her family with the message, “Here’s where I am right now.” Her parents beamed with pride at the advance in her communication.
  • Lunch outings were often to McDonalds. Most everyone chose Asian or Middle Eastern food instead after Darwin showed them photos of those buffet lines.
  • Caroline was passive when listening to the usual gospel, polka and Dean Martin music that she’d heard regularly. She became much more interested in her surroundings and people around her when she heard music new to her: AC/DC’s “Highway to Hell.”
  • Tim took many pictures of people in business suits, as well as people in authority such as police officers and others who wore uniforms. Did this mean that he wanted to be treated with more respect?

Darwin’s comments are what inspired me to explore this topic more in depth: I wrote my master’s degree thesis on this topic and have developed this website to provide information for others to use. Here are summaries of the self-reported comments from project participants.


Matthew

Matthew’s an 11th grader in an inclusive school, participating in general education classrooms and activities with all other students. His mom describes him as a person with autism and with a mental retardation diagnosis. For the past three years, he’s used a communication device that has photos to identify people and objects, and this system has been successful for him. Spelling and vocabulary words are loaded into his device at school, and he gives the class reports of his weekend activities every Monday. He’s also able to study for and take tests at school.

Matthew uses a tablet and iPod Touch loaded with his lunch menu, classroom assignments, preferred activities, schedules, people, etc…and he takes pictures of himself engaged in various activities with his classmates. He also uses game apps to play when he’s got some time to kill. Matthew’s family uses the tablet’s camera function to take photos and use them as labels and folders for his word bank. With the device and the pictures he’s taken, he’s able to communicate his needs – such as I’m sick, I’m hungry, thirsty, need to go to the bathroom, etc. He downloads his favorite music and enjoys watching his favorite music videos on YouTube.

The family uses the video function to record Matthew’s activities and play them back so he can see himself. Matthew’s previous communication devices were big and bulky. His mom said, “At least with an iPod, my son looks like every other normal person on the street” and said his self-awareness, pride, and confidence have dramatically improved because of his using these devices. As she puts it, “he is eating that giant elephant one bite at a time.”


Tait

“My tablet is my life,” said Tait, who’s written three books, has degrees in journalism and leadership ethics, and has lived on his own since age 21. “I use my tablet for email, studying, writing, reading books, texting and talking on the phone. I connect on Facebook to communicate with my family and friends and for my involvement in issues and events. The tablet helps me use my time more wisely.” Tait has cerebral palsy. He uses a wheelchair and says his speech is difficult to understand. “I use my tablet to spell out words when people can’t understand me,” he said.

“Before I got my tablet, I had a few laptops computers,” Tait said. “But the tablet is light and mounted on my chair. I can zip to a coffee shop, grab a snack, and be at work within minutes instead of dealing with a laptop. It helps me feel more independent.”


 

Zak

“I like to use Skype to call someone because I prefer to look at the person I’m talking with,” said Zak, who has cerebral palsy. “Also, if that person has a hard time understanding what I’m saying, they can watch me when I talk.” “Once I started using technology to write down my thoughts, it gave me a much clearer understanding of things and lessened the stress between me and my family. And my to-do list app helps me break down big things into smaller tasks so I’m not overwhelmed,” he said.

These apps have given Zak control of not only his school life but also to take charge of his social life though MySpace, Facebook, and YouTube. He looks up information and follows his interests. “I’m doing things I couldn’t have done even five years ago,” he said. “I now teach classes to help people be better self-advocates – to realize who they are as a person, develop their own opinions about issues, and how their disability might impact how they feel about things. I use Facebook for recruiting and to stay connected to my fellow advocates. Technology has made my advocacy work possible,” he said.


 

Ivy

Using her video recording and social media, Ivy’s built a website (www.ivykennedy.com) to spread awareness of personal care assistants (PCAs), who assist people with disabilities in their daily activities. She has cerebral palsy, and uses apps to manage her own money, and also in the interviewing process and when doing payroll for her PCAs. She began her self-advocacy efforts by posting many of her letters on Facebook, which led to her getting a job with an advocacy organization. She now uses her technologies for her job of creating and making changes to the organization’s website, Facebook and Twitter accounts, and to create online newsletters.

Ivy uses a tablet to connect to the Internet, and take video and pictures. She’s a board member on a few disability related groups, and uses her tablet and a touch screen mouth stick to take notes. For a long time there was no mouth stick for touch screen devices. She found a company online that worked with her to make a stick for her tablet. On a daily basis, she uses Facebook for personal socialization and a Twitter account geared toward advocacy news.

“Friends are very important to me,” she said. “Facebook Events has helped me be included in more community events, so I’m glad Facebook exists. I’m Facebook friends with a lot of parents of kids with disabilities. I think it’s good for them to see my posts to give them a different perspective on disability. “Being able to connect with other strong self-advocates on Facebook has helped my determination. Also, it’s a great support system if you’re having a problem, to be able to connect with others that have been there, too.” Ivy’s looking forward to getting a smartphone, because she found an app that operates a keyless deadbolt lock.


 

Will

Daily tasks have become more manageable for Will since he started using scheduling apps on his tablet. He has an intellectual disability and these apps help him be more independent at home and function by himself. Different tasks are programmed into the apps with a time schedule. Using the clock on his device, his tablet announces verbally when it’s time to do the task (such as get dressed for work, meet your ride, wash your clothes, etc.). With another app, general tasks (such as “get ready for bed”) are broken down into smaller parts (such as put items away, brush teeth, pick out clothes, etc.) and a “next” function announces whatever action is next on the list.

Will uses the camera function of his tablet to take pictures to show in PowerPoint meetings with his adult service provider. “This is an effective way for him to share his wants and dislikes,” said his mom. “He also uses his tablet to listen to books, play all sorts of games, and listen to his music. He’s also learned to program his music and hook up his tablet to a sound system. All this has built up his confidence to create a job for himself as DJ Chilli Willi for parties.

“The tablet has helped Will learn how to entertain himself, watch movies, take pictures like everyone else, and to feel like other young adults – with and without disabilities,” she said.


Jerry

Technology continues to be a big part of Jerry’s life. He retired in 2002 from a 30-year career, but hasn’t slowed down. He continues to telecommute to two part-time jobs, chairs six nonprofit boards and advisory groups, does fundraising for charitable events, and hosts a semi-monthly Internet podcast at outofstep.com/radio. Jerry has cerebral palsy. He’s used a smartphone for five years.

“I use my smartphone to manage financial investments, deposit paychecks, and pay bills,” he said. “I exchange emails through six email addresses and Skype, internationally, on a daily basis. I text, on average, five times per hour. I take pictures, stream music, place online orders, and I research the Internet for answers to questions for both myself and others who call me for assistance.

“Technology helps me be more self-reliant. I’m also able to conserve physical energy and maximize my time in the community. On one social media site I have 845 friends and connections. I’m active in five of the 25 groups of which I’m a member, and I administer one group. I contact family and friends for social events and to exchange personal information. I post in groups to remain connected to people with common interests and to raise awareness of community issues which I support.

“With access to the Internet via smartphones and other technologies, I not only remain connected to others, but I derive income through work. This allows me to live in my own home, employ support workers, volunteer in the community, and maintain an active social life.

“I have many friends who experience developmental disabilities,” he said. “All find the aging process to be debilitating and increasingly limits their ability to go into the community. Those who have no technology (beyond their television, radio, and telephone) universally describe their lives as boring and depressing.”


Alex

“My words get stuck,” said Alex, who has Down syndrome. “Sometimes I need to say it again until people can understand me. When I am on my tablet and/or Facebook, I don’t have to say it again.”

Alex uses a tablet and smartphone for access to the Internet. He uses an app called Text Plus, and also uses Snapchat and Instagram for sending picture texts of himself with his friends that he takes with his smartphone. On his tablet, Alex uses Skype and Seen (a Facebook video function). He posts on Facebook, Google Plus, and Twitter. He uses Facebook Messenger or text to make plans, Evite to send party invitations to his friends, Edmodo to connect to his classmates and to submit homework, and Survey Monkey to schedule staff meetings with his support people.

“I use an app on my tablet to record myself dancing and singing, then I post the video on Facebook,” he said. “I make my own decisions when I am on social media and when I text my friends. All my friends have smartphones and tablets and use social media, so I use all of them myself to communicate with my friends.”


 

Phil

Phil said, “I just got a tablet. I use it to dictate things, read meeting materials, and be better prepared. I like that I can take it with me when I travel and check email. I use Facebook to stay connected with friends and family.” Phil has cerebral palsy. “The tablet is very new to me, he said.

“I wish this technology would have been available when I was in school!”


Elias

Elias is 69 years old and has cerebral palsy. He uses a manual wheelchair, a four-wheel electric scooter, and drives his car by using hand controls. Elias uses a tablet when traveling. He feels it’s more portable than a laptop and useful for taking notes at conferences and during meetings. He uses Skype frequently for video and voice communication and to send text messages. It’s the main way Elias keeps in contact with friends, professional colleagues and family.

“Today’s technology has had a definite impact on my life,” he said. “I think the Internet has done more to increase my personal autonomy than any other factor. Access to the Internet is like having an infinite number of other resources at one’s fingertips right at my desk. In my opinion, the age of the ‘global village’ is well on its way to becoming a reality.”


Lindsey

“My smartphone and tablet have helped me interact in the community,” said Lindsey, who has a mental retardation label. “For example, when I’m talking to people, sometimes I will show them my pictures or share a favorite video about what we’re talking about.”

Lindsey uses the smartphone for texting, taking pictures, Internet access, and listening to music, and the tablet to text, email, listen to music, watch videos and TV. Facebook is another way Lindsey interacts with individuals such as teachers, friends, and family. “My smartphone and tablet help me keep track of my schedule and things I have planned for the day,” said Lindsey. “I’m able to look up recipes online that I may want to cook. I’ve learned to manage my bank account using an app, and I make decisions on how much money I spend.

“Sometimes it’s easier to text a question to somebody about something than it is to verbally ask them,” she said. “I was unable to tell my mom that I loved her, and then when I got my smartphone, I texted her that I loved her. Now we instant message, text, and even FaceTime each other and I can ask her questions and tell her I love her.”


Christopher

Texting, Facebook, emailing, music, and accessing YouTube are some of the ways Christopher uses his smartphone. He also uses it to schedule his paratransit rides to a children’s hospital, where he has been a volunteer for five years. He has cerebral palsy and uses a wheelchair. Christopher also uses a tablet. He uses the SpeakIt app every day for social media, email and texting.

“Checking Facebook and Gmail on my own makes me feel self-reliant,” he said.


 

Tana

Tana loves the independence and being able to demonstrate her wants and personality through her wheelchair. Her mom describes her as a 12-year-old social butterfly that loves her friends in her inclusive middle school. She has cerebral palsy and epilepsy, and is legally deafblind.

“She has facial expressions and unique hand gestures that those her care for her regularly understand,” her mom said, “but for most of her life she’d had difficulty expressing her needs to others. That’s changed a lot by using technology.” Tana’s used a tablet for four years to host her Facebook page, email, calendar, Skype, books and videos, and apps that are used at home and school for education. Her family is working on integrating the tablet to control her wheelchair functions.

Her mom said Tana used it in the early days to attract her friends to play on it. She now has over 400 apps that she uses to do class reports, presentations and other schoolwork, as well as to make music, play games, and listen to books. One app lets her choose different voices for her device. “The tablet has allowed her to be more involved and active in her world,” her mom said. “She loves the technology to play music on the tablet because she could never hold a real harp or sit at a piano as well as she can on the touch screen.”

Tana’s an active member of the community and society, participating in many activities for children with and without disabilities such as horseback riding, art classes dining out, theater productions and shopping. She plans to start volunteering in her community so she can interact with other children and adults.

Through Facebook, she’s connected with a woman in Brazil who saw her YouTube video and told Tana she was a good teacher in making the world more accessible and inclusive for others.


Jessica

Online classes work best for Jessica. She has a learning disability that made her reading comprehension difficult. She understands her class materials faster now that she uses audio apps that read the materials to her.

She also uses her smartphone for Internet access to research things for school. “I learn better by watching videos instead of taking the time to read something,” she said. “So if I want to find something out, I’m more likely to go right to YouTube because I would understand an explanation better that way, rather then doing a Google search and reading the same information.

“By having my textbooks in audio format, it eliminates the extra time it would take me to read the materials and understand things and I can spend more time coming up with answers to questions and showing my knowledge of topics,” said Jessica. “It has really helped me be more independent in my education.”


David

David’s a college senior majoring in Computer Information Systems. “An app on my smartphone gives me access to my classroom discussion boards,” he said.

David’s the webmaster of a site he built, rmpac.org. He lives on his own. He has cerebral palsy and uses a manual wheelchair.

“These technologies have helped me accomplish what people have said I would never do,” said David. “I’m self-reliant and am treated like people who don’t have disabilities.”


Jack

“Jack LOVES his tablet and also uses an iPod Touch all the time,” said his mom. “Using it gives him autonomy to ride the regular education bus. He interacts well and happily with the other people on the bus. His iPod keeps him doing typical activities for his age and focused on his own interests so everybody has their own personal space.”

He practices academic games such as Math Marble, Coin Math, Spell Board, and various interactive books. At home, an iPrompts app helps Jack with his self-care, such as getting ready for school, making his breakfast, heading out to catch the bus, practice his band instrument, get ready for bed, etc. Jack has Down syndrome, and as he learned to get ready for bed independently and in an ordered sequence, “he’s developed greater self-confidence and gave the whole family a sense of relaxation at bedtime,” his mom said.

His mom has also seen how “he’s expressing his desires in how he spends his time, and the devices have made it clear what Jack enjoys the most. We have learned from him that music, movies, photography and games are important to him. And it’s helpful to have academic support on some of the “fun” apps. We’ve also learned that since Jack works very hard at school and extra-curricular activities, it’s important for him to have down-time.”

Jack will soon get a smartphone and his older sister will share an Instagram account with him to stay connected with his friends and relatives.


Ross

“I use my tablet to help me read materials for my job,” said Ross, who has Russell-Silver Syndrome and a learning disability.

“I use a Natural Reader app for my emails. “My tablet helps me to understand what’s going on in the meetings,” he said.


Isaac

Isaac began using assistive devices when he was two years old. Now, 20 years later, he’s found that his using smartphone, tablet and social media technologies have greatly added to his self-sufficiency. He has cerebral palsy and uses a power wheelchair.

“I use a communication app on my tablet and smartphone ,” he said. “I use word prediction software and other tools for my written communication. I use Dropbox for files, Meeting Platforms, and I use DreamReader for written materials I receive.

Isaac has Facebook and his calendar synced between all his devices. “I like to be able to communicate and connect with people,” he said. “I use FaceTime daily and an app called Viber to text with family overseas. It is important to me to be connected to Facebook for family and friends. I would not want to ever be without my tools – I even hate it when I don’t have cell service.”

He described arranging the devices for his work. “If I’m giving a speech I use my communication device mounted to my wheelchair,” he said. “If I have a PowerPoint presentation I will have it on another tablet which is connected to the LCD projector. I can then use an app on my smartphone to change the slides. If I am doing a conference call meeting, I will use my smartphone to place the call, my tablet to speak and another tablet to see my agenda or notes that I’ve stored in my Dropbox account. I will also have a Bluetooth speaker connected to the tablet I speak with so that I am loud and clear. And I’ve started having my note taker use a Livescribe 3 pen so that I have a recording of the meeting as well as notes I can edit afterward.

“I have my smartphone with me always,” said Isaac. “I use it for calls, FaceTime, texting, my communication device, weather, calendar, camera, maps, road conditions, games, reminders, radio, reader and Internet access. Life!”


Kara

Kara’s mom says, “Kara lives on her own BECAUSE OF the tablet and two low-cost apps that have changed her life!!!!!”

One of Kara’s apps gives her timed verbal prompts in her own voice to guide her through her day. Another app can be programmed with step-by-step picture and audio prompts for tasks such as cooking and cleaning. Kara experienced Traumatic Brain Injury at age five when she was hit by an out of control skier. Childhood injuries such as that are considered developmental disabilities.

She uses a smartphone for calling and taking pictures, listening to music, and for using Facebook. She also has several apps for learning, recreation and socialization.

“I have abilities, not disabilities,” said Kara.

Her mom says, “I can’t say enough about the potential of technology to change lives! Without technology, Kara would be living in a group home at a huge cost to systems!!!! She has an awesome quality of life, and so do I as her Mom!!!!!”


Nick

Nick works at a brokerage firm. He has a tablet, but says, “I use my smartphone to run my whole life. I manage my schedule with it, and dictate emails and text messages.” His cerebral palsy affects his vision, but he can enlarge everything on his smartphone for easier reading.

“And I’m a Facebook junkie,” he said. I work on a disability awareness campaign called “Look Me In The Eye.” We communicate a lot on Facebook and by email. The technology has helped me connect more with my community, especially to schedule advocacy activities.”


Wally

Wally has cerebral palsy and works for a disability services agency that covers a large area of his state. “My job is to help people find resources,” he said. “I post disability- and program-related information via Facebook, including announcements on training sessions for employment, social security, and community inclusion. Before, the information was distributed by snail mail. Now, the information gets to the people who can use it, faster.”

Personally, Wally uses Twitter, Facebook, Pinterest, smartphone and tablet technologies. He uses dictation on his smartphone and synchs it with his tablet, and uses a navigation app to get where he’s going. Part of his socializing is belonging to a book club. He’s able to read books better on the tablet because he can make the print larger.

“One time we had a bad storm right at the end of a workday. I got an alert on my phone that power had gone out in my neighborhood. I was able to go to a relative’s house until it was safe to go home,” he said.

“The technologies can make you a lot more productive, and helps me save money. I canceled my cable service and now I’m watching TV shows on the Internet,” he said. “But technology can also suck up your time with games and other entertainment. You have to be disciplined.”


Kaaren

Kaaren thinks the tablet is really great. She uses a text-to-speech function and a Natural Reader app for her job as a senator’s assistant. She lives on her own, in her own home, and has an intellectual disability.

“I use Facebook a lot for my advocacy work,” she said. I’ve used an app to invite people to our meetings, and I learn a lot from different friends who are doing advocacy work and posting their activities on Facebook.

“Using my tablet helps me see what is out there in the world,” Kaaren said. “It really builds up my life.”


Emily

“My tablet has made my life better,” said Emily, who has Down syndrome. “I use the camera and movie maker, search for learning games and sports schedules, and listen to music also.”

She has a part-time job and uses FaceTime when she is out of town. She uses Facebook almost every day to stay connected with friends from the Partners in Policymaking leadership training program, as well as with family and friends from high school and other community activities. “I feel happy when I am on Facebook,” she said.

“Someday I will live in my own place and my tablet and smart phone will go with me.”


Creed

Creed’s used a smartphone for about three years. He has two Twitter accounts and three Facebook pages: one for friends, one for family, and one for his advocacy work.

For a project he’s working on to increase the accessibility of crosswalks nationwide, “I have a network of advocates that I can reach quickly via Facebook,” he said.

Creed likes using Skype so he can see people when he’s talking, and his Voice-on-the-Go app allows him to attach voice recordings to his Facebook emails. He has cerebral palsy and is not a fast reader – but his reading comprehension is high, so he uses the Audible app for reading.


Andy

“Technology has been something that has opened up the world to me,” said Andy. He acquired cerebral palsy through a traumatic brain injury as a child. He uses a wheelchair and that he controls with head switches. He controls his tablet with his head switches, too.

He uses his tablet to look at Facebook and emails. “I love to be part of my community, and it’s very important to me,” he said. “I feel useful and am able to hold a real job.”


 

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