Rachel Simon is a best-selling author. Her best-known works, Riding the Bus with My Sister and The Story of Beautiful Girl both focus on people with disabilities and issues surrounding them. Riding the Bus with My Sister is an intensely personal memoir about the year spent with her sister Beth, who has a developmental disability. Beth and Rachel spend a fair amount of time riding buses in Reading, PA, and the memoir covers subjects such as their experiences on the bus, forgiveness, the bond between sisters, and of course the life of the disabled.
In her most recent work, the novel The Story of Beautiful Girl, was published in 2011 and also has people with disabilities as a subject. A moving tale, it is a love story about a couple with different disabilities and their child that also tackles the issue of institutionalization of the disabled.
Simon recently came to Penn State to give a talk titled “Perspectives on Intellectual Disabilities.” I had the honor of interviewing Simon about how assistance for the disabled has changed, how technology is helping the disabled, and the critical role those of us who work in technology play in assisting the disabled.
How have things changed for the disabled as far as assistance that they receive? Have things improved, and has anything become worse?
One of the reasons that The Story of Beautiful Girl spans 43 years is to show much much has changed for people with intellectual and developmental disabilities. In 1968, there were almost no services for children or adults, and, in some places, no opportunities for education. As a result, families often felt that the only option was to place their child in a large state institution, where the care was sometimes unreliable and occasionally abusive.
But in the 1980s or so, institutions began to close in favor of services in community settings, such as the family home, group homes, shared living, or supported independent living (which is what my sister has). There was a related rise in professions that provide the necessary services, from special education to occupational and speech therapy to the people who provide direct care, known as direct support professionals. Technology created many opportunities, too, through such advances as assistive devices, apps on smart phones and tablets, and social media. Education is now federally mandated, with inclusion becoming more widespread as a goal. People with disabilities are regularly seen on TV and in the movies. These are all great improvements.
But many problems remain. Institutions still exist, and in some areas there are woefully few residential options. Budget cuts by states and the federal government lead to waiting lists for services that might last ten or more years. Services cannot be provided without a qualified workforce, and due to extremely low wages, there is a very high rate of turnover among direct support professionals, as well as far too few people to fill the open positions. Inclusion in education is far from universal. Technology, while opening the lines of communication for people with disabilities, also opens the door to more bullying, especially on social media. We see many more actors with disabilities, yet the use of the r-word has become appallingly commonplace throughout the media.
So we’re in a much better place – but we still have a long way to go.
In The Story of Beautiful Girl, the character Beautiful Girl communicates through drawings? What inspired that idea?
I have met many people who communicate in ways other than speech. Some use assistive devices, as I mentioned above, so they can, for instance, use a mouth-stick or blow-tube to type words that are then transformed into speech. Some use sign language, or picture boards. When I realized that Beautiful Girl didn’t speak, I also realized I wanted an alternate way for her to communicate, though since she’d had no education or speech therapy, and had no access to assistive devices, I wanted her to find her own way to expressing herself. Art is something many people do without any training at all, and since my sister does a lot of drawing, I was naturally led to the idea of Beautiful Girl doing drawing for her art, and then turning it into a way to communicate. (Though she cultivates this skill with the assistance of a staff person, Kate, who is the direct support professional in the book.)
What role do you see technology playing for the disabled in helping them live their lives? (for example, communicating with others, helping them get around, sharing their experiences, etc.)
I see technology as having an unlimited role. The examples you give–communicating with others, helping with mobility/transportation, and sharing their experiences with others–are certainly right up there near the top of the list. There are others as well. For instance, there is now electronic monitoring, which can allow an individual to live independently. There are alternate ways for a person to participate in education, from online learning to e-books that can customize the resizing of the print to textbooks that are converted to audio formats. People can also create their own sense of community through such things as Skype, Facebook, and Youtube. In addition, technology helps create a more inclusive built environment through the use of such things as automatic door openers, motion-detecting lights, and appliances that respond to voice as well as touch. My hope is that both the online world and the physical environment will move much more toward universal design, and technology will be essential to that.
What role does those in higher education play in helping disabled people, as you put it at your talk “lead beautiful lives”?
I also see this as unlimited – though it requires that educators presume competence and intelligence, and then proceed with respect, creativity, and an awareness of the wealth of resources available to their students. Educators should not underestimate the importance of viewing their students as people with bright futures and an ability to learn–especiall since many of these students might be battle-weary, and in fact have received little support from both educators and fellow students. It is just as important for educators to recognize that everyone learns in his or her own way. For instance, while some students learn well through social interaction, and are therefore able to participate easily in class discussion and group projects, others learn better when working alone.
As a result, the respectful and creative educator won’t mark a student down for lack of the more traditional “class participation,” but will find alternatives that work with the student’s strengths. I bring this example up because, when I was teaching, I offered my less socially-inclined students the option of emailing me their contributions to the class discussion immediately after class ended, thus allowing me to give them full credit for class participation. They loved having this option and took full advantage of it.
What are some things that people who work in technology do to help?
Immerse themselves in the lives of people with disabilities so they can see the needs and wants that haven’t been adequately addressed by technology, as well as the cultural obstacles people regularly confront. It can be easy to assume one knows what other people need and want, but the chances are good that such assumptions will be paternalistic and wrong-headed. And by “immerse”, I mean developing and maintaining real friendships, as well as working, playing, studying, eating, watching sports, moving around campus, and visiting family side-by-side with people with disabilities. Basically, I think it’s important for people in technology to view those with disabilities not just as equals, but as full collaborators.
