Til hovedinnhold

Video transcription Natalina Martiniello

Facilitators and barriers encountered by working age and older adult braille learners

NATALINA: Hello, everyone, my name is Dr. Natalina Martinello, and the title of my talk today is Facilitators and Barriers Encountered by Working Age and Older Adult Braille Learners. So, this is one of several studies that I conduct on Braille adulthood and aging. And I include the link to the open access article for anyone who would like more details. There aren't many of us who focus specifically on Braille learning in adulthood, and I'm always very excited to connect with others who work in this space. So, if this is a topic that interests you, I encourage you to contact me and I include my contact details on this slide. So, I'd like to frame this discussion by touching on why it's so important for us to be talking about Braille adulthood and aging and why this is such a timely topic. So as many of you may know, the prevalence of older adults with acquired visual impairments is rapidly increasing. This is due both to population growth and aging. And so, unlike the past, the most common visual conditions that are encountered in vision rehabilitation today is those that are acquired later on in life. I show a graph on this slide which illustrates this nicely. So about 80 percent of people by age 70 will have a vision, hearing, or dual sensory impairment. So, of course, when we're discussing Braille in, in this older age group, we're thinking not only about clients with vision loss, but also, those with dual sensory impairments who may have no other vehicle through which they can access information. And within this context, reading-related difficulties are actually the most common reason for old people to vision rehabilitation today. So, although adult Braille rehabilitation has been in existence in some form since the early 20th century, due mostly to the two worlds wars, which as many, as many of us know, led to an increase in blinded veterans, we actually know very little about the experience of learning Braille in adulthood and how to best support older Braille clients. Much of the research and practice on Braille focuses heavily on blind children. There are suggestions of lower referral rates to adult Braille rehabilitation and higher levels of abandonment among adult Braille clients once training concludes. And decisions about who should learn Braille are sometimes left to professional judgment. And there are also vast inconsistencies in the ways in which adult Braille clients are assessed, are trained or supported across rehabilitation centers generally. This is especially true in countries like Canada, where I'm located, where discrepancy in geography and health care often lead to differences in service delivery. And certainly, that's something that I experienced having, having worked as a rehabilitation specialist here. Okay, so what then are some of the key differences between children and adult learners, and what implications might this carry for practice? I'll just touch on a few examples here for reflection, but I'm sure many of you will think of the others to add to this list. First, children, of course, learn Braille through the process of acquiring fundamental literacy skills, spelling, grammar, punctuation. And so, an emphasis is placed on concept development and acquiring all of those foundational liter- literacy skills that are needed. On the other hand, adults, of course, come with a lifetime of literacy competencies, though, it's worth bearing in mind that those literacy competencies among adult clients may differ. And we don't talk about that enough. But adult clients really require greater emphasis on perfecting the mechanics of Braille reading, which often touch on capacities that are underdeveloped. For example, tactile sensitivity. So, second, the typical aging process is associated with gradual declines in tactile sensitivity, motor dexterity, cognitive capacities that need to be considered during the Braille learning process. So, for example, tactile sensitivity is shown to decline at a rate of one percent per year. On the slide, I show the results from four tactile acuity tests that I administered to 48 adult Braille readers between the ages of 22 and 88. In all cases, tactile acuity thresholds increase, that is, they get worse with increasing age. However, we also know that the blind outperform the sighted across all ages. And so, this really highlights the fact that tactile skills are experience dependent. The more you use those tactile skills, the more you'll maintain them throughout life. So, the third distinction between children and adults come from the field of Andragogy or adult learning. So, we know from rehabilitation generally that, of course, stigma can play a role for clients who are experiencing vision loss and who may feel reluctant to use tools like Braille that disclose their impairments to others. But we also know from adult learning in general that there are other factors that may play a role. For example, anxiety about returning to school, reluctance to change, all those adult responsibilities that bear upon our time. And this has led to the development of adult learning paradigms, for example, transformational learning theory, universal design for learning, that's really geared towards the unique needs of adult learners. For the most part, the applicability of these frameworks have not really been considered within the context of Braille. So, with all of that in mind, the goal of this study was to explore the experience of learning Braille later on, in life and to identify the facilitators and barriers encountered throughout this process as a precursor to developing evidence-based policies and practice that address the identified gaps. So, we conducted semi-structured qualitative interviews and used thematic content analysis to categorize the emerging themes. If you'd like to know more about methods and analysis, feel free to ask me during the Q&A or to refer to the full article. So, in total, we interviewed 14 participants between the ages of 40 and 72 who learned Braille between the ages of 33 and 67, seven men and seven women were recruited, 12 learned Braille through rehabilitation centers and two through correspondence courses. After Braille training concluded, five of the participants reported using Braille daily, four several times per week, three once per week and two several times per month. So, we found that the adult Braille learning process is characterized by a variety of personal, social, and institutional factors that can function as either facilitators or barriers. So, I'll just touch on some of the major themes in this presentation. So, in terms of motivations for learning Braille, prior identity emerges as a really significant factor that either helped or hindered the decision to learn Braille. So here, participants who perceive themselves as readers, as being the really core part of their identity prior to vision loss viewed Braille learning as a means of regaining a fundamental part of themselves that they felt they had lost. So, in this way, there was this really interesting distinction drawn between identity before and after vision loss and that disconcerting period in between before Braille was learned. So, we have a really powerful quote from one participant who says, well, when I read print, I had an internal voice that read along with me. And when I read Braille, I get my internal voice back. It's just... My existential self is kind of reaffirmed. I feel like I am not losing anything. It's that crisis that happens when you have yourself taken away, the things that you identify with strongly, like in my case, reading... And then all of a sudden that's gone, people say, well, do something else. But remember, I'm an adult and you don't become something else readily. So, for these participants, the learning of Braille really afforded them something that cannot be gained through other forms, like audio, because they really spoke of Braille as a form of literacy that was equivalent to the print that they remember as sighted readers. On the other hand, participants who did not view themselves as readers assume that Braille would not be for them. And this misconception often delayed the start of training. So, regarding psychosocial responses to Braille and blindness, three main misconceptions about Braille emerged that influenced both the decision to learn Braille and training outcomes. The idea that Braille is too difficult to learn, that it's only for those who are totally blind. And as we touched on just a moment ago, that it's only for those who engage in extensive reading. So, these misconceptions were often unconscious. And so, if they weren't addressed, they often delayed the start of training. For example, one participant said: "There was a group at the time and I went to a couple of meetings, but I was kind of turned off because they were all blind and I didn't think I was that bad yet." So, you see this idea of stigma, but also, the misconception that it's only for those who are blind. Previous learning either helped or hindered the Braille learning process, depending on whether this was attached to positive or negative memories. So, participants with positive learning memories use these as analogies to really motivate their learning. For example, one participant used the analogy of being a young child and learning to tie your shoelaces. It's really hard at first, but one day it just becomes automatic. So, so this really served as a useful reference point to motivate the real learning if they thought about other similar experiences from the past. On the other hand, participants who had negative previous learning experiences or who were not confident in themselves as learners felt that this impacted their confidence during, during Braille learning. Similarly, participants highlighted past learning tactics that were effective for them in the past and that they drew on during the Braille learning process or that they would have liked to draw on if given an opportunity. For example, drawing on visual memory to think about how print and Braille letters sometimes resemble each other or using self study tools, which was effective for some people. Unfortunately, these strategies were not always employed and assessment did not always ask clients about their past learning. So, turning to social factors, participants highlighted how family members can often function as vital sources of support during the training process, much as they do for children who learn Braille. So, for example, driving them to lessons, showing an interest in learning some Braille, helping them label household items, and even just showing a respect for Braille materials by not putting objects on top of Braille materials at home was really meaningful for participants. On the other hand, participants also described that family members often carry their own misconceptions and biases that often remain unconscious and unaddressed during the learning process. For example, the idea that Braille would be too hard, leading to comments that would discourage some participants who may have been struggling at first, as we all do when we're learning something new. For example, "Well, you don't really need it if it's that difficult." Participants with low vision also highlighted that family members may be unaware of the benefit of Braille or may show confusion, especially if the learner has been downplaying or hiding their visual impairment due to stigma. Overall, participants agree that there's a really big need for greater resources to support family members, and that training tends to focus exclusively on the adult client and not on those around them who also play a role. A second social theme relates to responses from the general public. So, participants overwhelmingly expressed that reactions from the general public remain a pervasive problem and that the usual social contract is often broken during social interactions. So, for adults still adjusting to vision loss, using Braille in public was really described as putting you on display and can lead to really awkward and unwarranted interactions. For example, one participant describes having a book removed from her hands. She says: "I said, 'what's happening? What's happening?' And this woman said, 'Oh, I wanted to show my grandson.' And I said, 'You can't do that! Do you do that to sighted people, come to them and remove their book from out of their hands?' She gave it back to me and said, 'Read to him,' and I said, 'Please don't do that.'" So, an interesting thread emerged related to the experience of identifying with a larger Braille or blindness community and the influence this had on identity formation for adult Braille learners. For example, one participant describes coming to the realization that remaining a non-Braille reader in a sighted world was more disabling than being a Braille reader in a blind world. She says: "I knew totally blind people who knew Braille and read it extraordinarily well. You know, it was the weirdest experience. I went to a restaurant with a totally blind friend and they read the menu to me. I couldn't read the menu. So, I'm stuck in this nowhere land because I'm in the middle. I can't read print, but I can't read Braille." So, in this way, Braille really becomes inseparable from the identity that adult Braille learners need to negotiate. And this carries implications because Braille learners who identify, kind of view blindness through a medical model lens as an impediment tended, tended to view Braille as something to be avoided, a symbol of blindness, and those who viewed blindness through an identity lens as one part of who you are coming to view Braille as an empowering tool that could increase their independence. And this kind of perspective was really described as being forged, often through knowing other Braille users. So, at the institutional level, awareness and availability of resources was highlighted as a pervasive barrier for almost all adult participants. So, on one level, this really referred to just a general lack of services for adults who wanted to learn Braille, not knowing where to go or just really extensive wait lists that affected motivation or delayed the start of training. But on the other hand, this also referred to just a lack of awareness of resources that did exist and that would have been important to solidify learning once training began. For example, one participant talked about how they didn't know where to access library books in Braille and that they had to wait a year for those books to arrive, which really affected motivation since they had no way of practicing between sessions. A big theme here related to access to funding to purchase Braille displays, which would provide motivating materials for adult learners, for example, access to websites and email and social media. But of course, these tools are often out of reach for adult clients. So, Thomas said, for example: "We did see a Braille display and it was really neat, but it was so expensive I probably would have used Braille more if I actually would have had my own Braille display." So, for the final institutional factor, most participants described what they perceived as a reluctance among some practitioners to consider brail instruction for them as older learners, either due to biases about Braille as a code or about the abilities for older adults to learn. So, this is by no means the perception of all practitioners, of course, but it's noteworthy that this came up at all. So, for example, one participant shares her experience when approaching a practitioner about learning Braille, and which was quite upsetting for her. She said: "He said, 'No, you're not ready.' And I almost cried. I thought, is this it? I could learn. I could learn to read a new code write a new code. I could touch paper again. And you're saying no? I was devastated." Others expressed that their advanced age led professionals to comment that they might not be able to succeed to the same extent as younger participants, which really affected their motivation. So, there are a couple of policy and practice implications that I want to highlight here. First, it's very clear that adult Braille learners may carry misconceptions about what Braille is and who it can serve. And so, the onus really remains on rehabilitation specialists to be cognizant of these unspoken biases and to foreground the practical application of Braille throughout training and to address these misconceptions that may prevent adult clients from considering Braille. We also see that other formats, such as audio, may not really address the identity gap that some participants experience. And so here we really need to be considering not just what method is best for a specific task, but also, the feelings that people attach to literacy and to reading in the past and the holistic experience of reading as an important source of motivation when deciding what methods to, to consider for clients. Previous learning. We don't really ask about previous learning experiences as part of the routine assessment process in adult Braille rehabilitation. That's a problem because the, the difficulties that adult clients might encounter are often not necessarily due to Braille, but due to these other factors. Right? Your learning aptitudes that you bring with you and your literacy skills. We don't assess literacy as part of the adult Braille rehabilitation process and we need to be doing that. It's also clear that we need more resources for family members who may want to learn Braille and to address those misconceptions as part of the standard, the standard process of training. We also see the benefit of knowing other Braille users as adult Braille clients negotiate their identities and their feelings towards both Braille and blindness. And these opportunities are often not available, since Braille, like other forms of rehabilitation, are often taught in isolation. And so, we can often tell clients what's possible, but it's often more empowering for them to see it themselves. And so, we need to think about how to make those connections with other Braille users as an important part of that process. So, responses from the general public. We can provide clients with all the tools that they need to increase their independence like Braille, and they will still encounter barriers in society due to all of these negative perceptions about Braille and blindness. And so, we need to think more broadly about how to rehabilitate not just clients, but also, societies that hold these misconceptions and that can really influence the outcomes of the clients we serve. And what can we do as practitioners to address this really pervasive problem. At the institutional level, we definitely need greater resources for adult Braille learners motivating adult Braille materials. Abandonment may sometimes happen because there are just such few opportunities to practice Braille between sessions and once training ends. In another study, we found that frequency of Braille usage was a significant correlate of Braille reading performance in adulthood, regardless of the age at which Braille is learned. And so, this is really noteworthy, given that frequent opportunities to practice Braille is highlighted as a significant barrier for adult Braille clients in this study. Funding programs need to be reexamined to consider the unique needs of older clients who often fall outside of eligibility criteria to purchase Braille devices. We also need to consider advocating, continue advocating for lower cost Braille devices, which can be really beneficial to adult Braille learners. I include a citation to another study where we explore the potential role of Braille displays in adult Braille rehabilitation here on this slide. Finally, rehabilitation specialists need to remain self-reflective about the unconscious biases that they may hold towards Braille and blindness and aging and how that might influence clinical decision making. For example, we know from other research that practitioners who feel less confident about their Braille abilities may be more reluctant to consider Braille as an option. We also know from other domains that ageism often affects the quality of services that are provided to older adults in general. So overall, these findings really bring to the forefront barriers that can be addressed through policy and practice changes, so, we should see this as an empowering opportunity. These findings also complicate the notion that physical factors or age alone is solely or primarily responsible for the outcomes of older Braille clients. So, with that, I would like to thank everyone who supported this research and I'm happy to answer any questions.