Thinking about Literacy and Intellectual Disability

Poster from the City of Toronto Literacy Campaign

One of the most powerful parts of the work we’ve done over the last several years has been a) realizing how illiteracy affects people with disabilities and b) witnessing their inclusion in conversations about their lives in some of our work using graphics and plain language, dialogues and story-telling and, more recently, theater and music.   Several times people have gotten quite emotional about feeling, finally, part of conversations and empowered to the point where they can participate.   Literacy and disability is part of a huge conversation but these are some of the ideas we’ve found interesting.

Ideas around literacy and people with disabilities have changed radically over the last decade or so.   Some research links illiteracy to criminal behavior, while others suggest that the problem might also be defending oneself from charges when one is illiterate, and other literature makes a link between illiteracy and vulnerability to sexual abuse.   Literacy affects things many of us take for granted, such as budgeting – it’s hard to figure out what is going to cost more or less when comparison shopping at the supermarket if you can’t read the packages and cans (and, interestingly, studies have been done showing that the more “no name” a brand is, the less images appear on the packaging, making it even more difficult).   In at least one case an older woman returned to school to learn how to read because her institutional caregivers said her inability to read her prescription labels made it impossible for them to consider her leaving for a life in the community.  She continues to grow her literacy skills, even  as she approaches her 70s.   And lives in the community just fine.

Self determination and opportunities for life long learning have also increased in the lives of some people with disabilities, who have been able to continue educations beyond school.  I love this passage from an interview with self advocate leader Betty Williams about running into an old friend in an adult literacy class:

[My friend and I] in the same special education classes in junior high and high school. One thing I remember, we were talking about being back there in the dungeon [what they called the special education room]. We ran into each in a reading class after we were adults, and she is like, “You are taking reading too?” I am like, “Yeah, I am taking reading too.” She said, “You know, why didn’t they teach us this stuff in school?” Now, we know we could have learned, but they just didn’t take the time with us when we were in school. They didn’t have or they didn’t want to take the time to teach us in school, and some of us could have learned and had a better life. Education is so important even for people with disabilities. Some of us can learn, but they don’t take the time to really teach us. So that is the really bad part. We want to learn, but sometimes people say we can’t learn or they don’t take the time to help us do that.

So, we would feel bad when we were in school. I didn’t really start feeling good about myself until I was an adult and saw that it wasn’t so bad to have a disability. You could feel better about yourself even though you had a disability.

To see a video of Betty talking about her school experiences, click here.   https://www.youtube.com/watch?v=KmLQygCeOBk

Howard Goldstein, in a paper called, “Knowing What to Teach Provides a Roadmap for Early Literacy Intervention,” makes the point that people get so caught up in who gets what funding under what designation, that the conversation about what gets taught is often lost.  This gets more complicated because funding decisions are sometimes made based in part on literacy scores.   While, he writes, the duty of educators is to prepare all students for a “highly literate world,” this is a new idea – even in 1986 educators generally agreed that the only special education students would benefit from literacy were deaf students.

While the world becomes increasingly literate as more and more people get involved online, people with disabilities seem to be using some of these formats to continue learning in informal ways.   In the article,  “Instant messaging, literacies, and social identities,” authors Lewis and Fabos write, “In light of its popularity among youth and the fact that reading and writing are central to its practice, IM [instant messaging] seems an important form of literacy for researchers and educators to examine. IM motivates young people to engage in decoding, encoding, interpretation, and analysis, among other literacy processes, and yet very little empirical work has focused on this form of digital literacy.”

I noticed that the literacy of people with disabilities in my life and work seems to have increased with their online presence, so thought I would ask on Facebook what others thought.    Our friend Cheryl says that she’s “learned some really cool phrases … for texting” and she thinks being on Facebook has, in various ways, supported her to “be creative in writing more poems,” given the feedback that she gets there.  “I also like the editing part here, we can change whatever we want.”   Sheenagh agrees that she thinks it has helped people improve their literacy, and says, “I’ve noticed with my friends that it has.”   I have noticed several times that people on Facebook will be helping each other with their grammar and spelling and, in terms of reading, they are motivated to read about what has to do with their lives and the lives of their friends.    So people who might not read a whole book, or might be intimidated to pick one up, might now be reading every day on Facebook.

Keenan says that his organization has “supported many people labeled with ‘low literacy’ to acquire smart phones even though in some cases those closest to them were not sure that they could/would make use of them. Well, motivation and real-time communication is great for many people with intellectual disabilities, and the technology is truly life-changing for some! For example the amount of anxiety around social gatherings in the community can be devastating – in terms of using the transit system and trying to find locations etc. – now more and more people are using texts (or making calls) to share information – I’m on the bus, I’m almost there, I’m at the front doors, where are you? – it’s really helping people be more independent and more interdependent! Our staff members also find that certain people simply prefer to text, whereas they would not otherwise communicate.”  He also makes this interesting point that once they are comfortable, they move on to use online services for other things such as banking, bus pass, event registration and that there are many advantages – they are able to take their time without stress and also get receipts.   “With online [services] the support is very adaptable.”

Some of the technology that’s useful is different that we might expect.  Catriona says that the “GPS in the car was a great instigator of spelling for our son. He was so motivated by the maps and directions, and the fact it got us precisely where we wanted to go. Now he texts us regularly and with his iPhone and uses emoticons and other pictures to make jokes!”

We noticed with our kids that things which had been a struggle in classroom situations were, in different situations, able to demonstrate literacy that was unexpected.  One of our foster kids would read all the billboards out loud as we drove to school, but once there could not read; we were able to build on this by starting to go for breakfast each day and reading the newspaper together but, again, when he got to school he was unable to read.   People go to great lengths to hide illiteracy.  One young man was in the middle of being tested when the tester huffed out of the room and started to tear a strip off me because I hadn’t said that he was legally blind and needed larger print, so they were unprepared for his test (he had no vision problems at all).   In less stressful situatons, on a smart phone, Facebook or email, reading and writing appear to be much easier.  In one of our kids, literacy skills increased by about three grade levels after school graduation.  In another, she went from a very rule laden kind of literacy to a much easier, age appropriate text-literacy that allowed for social connections with other children using the same kinds of abbreviations.

These ideas are in keeping with research by Andrea L. Ruppar, in a paper called “Authentic Literacy and Communication in Inclusive Settings for Students with Significant Disabilities,” where she demonstrates that in inclusive classes children develop more useful literacy skills.

An interesting thing in the study of literacy these days is the differentiation between formal (school) and informal (daily life) learning and, in literacy, between the study of reading and writing as literacy and “literacy events” – which are less formal and often have more to do with relationships.   I really like the ideas in Kliewer, Biklen and Kasa-Hendrickson’s paper, “Who May Be LIterate?  Disability and Resistance to the Cultural Denial of Competence,” which examines the idea of illiteracy as a social construction targeting different groups, including people with disabilities in community.  The authors look at individuals who have found ways to demonstrate not just basic literacy but very high concept writing and reading as methods of thinking through moral issues.

So, as we continue our investigations and conversations we are increasingly convinced that we are on the right track in supporting people in story-telling and sharing, in new ways of understanding together, and communicating their ideas, and in the writing and publishing of books by, about and for them.

What are your thoughts on literacy in the lives of folks you care about?

Sources

Kliewer, Christopher; Biklen, Douglas and Kasa-Hendrickson, Christi.  “Who May Be LIterate?  Disability and Resistance to the Cultural Denial of Competence.”   American Educational Research Journal, Summer 2006, 43-2 (163-192).

Lewis, Cynthia and Fabos, Bettina.   “Instant Messaging, literacies and social identities.”    Reading Research Quarterly Vol. 40, No. 4, 2005 (470–501).

Ruppar, Andrea L.   “Authentic Literacy and Communication in Inclusive Settings for Students With Significant Disabilities.”  Emergent Literacy and Intellectual Disabilities

Williams, Betty.  http://digitalassets.lib.berkeley.edu/roho/ucb/text/williams_betty.pdf