Who Needs to Fit in? Who Gets to Stand out? Communication Technologies Including Brain-Machine Interfaces Revealed from the Perspectives of Special Education School Teachers Through an Ableism Lens
Abstract
:1. Introduction
2. Conceptual Approach
2.1. Ability Expectations and Ableism
2.2. Perception of People with Disabilities
The vast majority of family members and doctors believe that the quality of life in total paralysis is poor, that continuation of life constitutes a burden for the patient and that it is unethical to use emergency measures such as tracheostomy to continue life. The pressure on the patient to discontinue life is high [55].
3. Method
3.1. Participants
3.2. Data Collection
Desirable features for new and envisioned communication technologies |
---|
Make the technologies smaller |
Make the technologies invisible (incorporate nanotechnology) |
Make the technologies faster |
Make the technologies lighter |
Make the technologies appear more flashy; allow it to stand out |
Make a more 'wearable' technology to improve portability |
Incorporate technologies into our bodies (transhumanism) |
Make the technologies more affordable |
Make the technologies simpler so that we can learn how to use and teach them faster |
Not much change is required |
3.3. Data Analysis
3.4. Study Rigor
3.5. Limitations
4. Results
Classroom demographics | |
---|---|
TA | Communication focus |
TB | Pre-communication—preparing students to transition to TA's class |
TC | Visually impaired |
TD | High medical and physical needs |
TE | Higher functioning, behavioral, varied communication abilities |
TF | Heterogeneous - autism, non-verbal, verbal, ambulatory, physical needs |
Average | Ranking * | Desirability |
---|---|---|
2.17 | 1 | Make a more 'wearable' technology to improve portability |
3.17 | 2 | Make the technologies more affordable |
3.83 | 3 | Make the technologies faster |
4.67 | 4 | Make the technologies simpler so that we can learn how to use and teach them faster |
4.83 | 5 | Make the technologies smaller |
6.17 | 6 | Make the technologies lighter |
6.33 | 7 | Incorporate technologies into our bodies (transhumanism) |
6.50 | 8 | Make the technologies invisible (incorporate nanotechnology) |
9.17 | 9 | Make the technologies appear more flashy; allow it to stand out |
9.83 | 10 | Not much change is required |
0.17** | 11** | Accessibility |
4.1. Fitting in by Not Standing out
4.1.1. Social Acceptance
TA: (…) I just love it because of its size, its portability, and a huge one is its acceptance with the world at large (...) There’s a little story about one of our students (…) just really extended family, lots of interaction with cousins and everything. The parents had said, “You know, when we go out to family functions, all the other kids come and say hi, you know, and stuff like that and then go off to play”. They got her an iPad, not a communication device, or nothing, just an iPad. And now all the kids were coming and (…) hanging around with her (…) Now they’re not going to stand out as much as with a big, huge Dynavox, but (…) maybe be right in with the crowd and accepted just like anybody else. So that’s the neat thing.
L: (…) when you say that iPads don’t really facilitate that communication need (…) what do you mean? Do you mean the interaction?TA: Right now, mostly the challenges (…) of it working consistently. Let’s say you have a communication page on there and the student wants to access it but he swipes his hand a little bit and, it’s like uh oh, this menu has come down. Now he can’t use the communication page that’s on there because this drop down menu has come down. So those kind of challenges. That’s what I see.
TA: (…) make [communication devices] more flashy, allow it to stand out (...) I think I was going the other way around, not to have it stand out. Unless it’s the iPad which brought people to it, you know (…).
TA: (…) two ways I look at it is…non-invasive is definitely very, very good because you don’t have to have surgery and whatever and all that kind of stuff (…) But then, you could stand out with other people and not fit in as well and that kind of stuff (…) it just depending on, on what (…) what it looks like.TB: (…) It’s always, ‘oh faster, lighter, smaller, invisible’, you know (…) I get that, and certainly in terms of portability and if I want to present as a typical kid or a typical person, I would want it to be as invisible as possible whether or not that meant, intrusive. Surgically, that wouldn’t bother me (…) but that’s my personal feeling. It might bother someone else and certainly, if (…) there are medical implications, obviously, then you wouldn’t want that either.
4.1.2. Not Adding to the Impairment
TB: (…) “make the technologies appear more flashy, allow it to stand out” (…) I (…) don’t see any um (…) I can’t think of any reason why (…) certainly (…) if I was the one with the technology, that’s the last thing I would want is, you know, a beacon on my head saying I have a hearing aid, or I have a disability, or I have a challenge or whatever, unless it was necessary for me to communicate to that to somebody and then I would communicate it. I don’t need it to be flashing to, you know (…) to stand out for that.
4.1.3. Fear of Judgment by Society
TF: (…) I think a lot of times when we look at people that are using different devices to assist them in whatever way they need (…) it’s easy to look at what they have with them and what’s there and it’s easy for general society to make judgements and (…) having certain perceptions based on what they’re seeing and so, in a way I think if it’s smaller, it’s just more so as though they don’t have anything different than you and I for what they need to communicate.
4.1.4. Pursuing “Normality”
TE: (…) Four, “incorporate technologies into our bodies”, well wouldn’t that be the dream (…) realistic? I don’t know if that’s possible for everything?L: Why would that be so great?TE: Well (…) then they wouldn’t have to port anything around (…) you know, really (…) it could be a function of them and then they could function, you know, as close to (…) typical as possible. Especially as far as communication goes, you know, and (…) wouldn’t that be nice?
4.1.5. Meeting the Demands of Society
TB: (…) The sales assistance in Zellers is not gonna stand there and wait 5 min for you to tell her that you want a red t-shirt and not a blue one. So, and (…) for you, personally, you know, if that’s (…) it wouldn’t happen ‘cuz you would have given up on Zellers a long time ago.
TA: So they do not have (…) a very efficient way to access [communication], so then message production (…) it takes a long time. So I think that’s one of the biggest hindrances in communicating, with others. Even us, who are dedicated to this, sometimes we just can’t give them the time that they need, let alone out in the community with regular kids and others. In a regular classroom, topics change and go and everything and (…) there’s (…) it’s really, really hard for them to keep up (…) they’d be doing a, a message with one (…) about one thing that was happening and the whole class would be 5 or more steps down the road. Even individuals that access (…) well and all that kind of stuff, it’s still incredibly (…) what’s that (…) 120 words per minute is what (…) I’ve heard that we speak. Whereas, I think, an accomplished user of a speech generated communication device, 10–15 words per minute.
4.2. BMI Technology
4.2.1. Benefits of BMI Technology
- The elimination of the operational challenges experienced by students with physical impairments.
TA: (…) I’m looking at some students that are physically very, very challenged and (…) operational is one of the biggest needs of accessing a communication device, so then the physical ability is not necessary with a brain machine interface.
- The ability to receive feedback from students would allow teachers to better meet the needs of the student.
TF: (…) getting feedback from students is just (…) I guess, the biggest way that you can see if you’re having an effect and if learning is happening and (…) things are being internalized so, it would certainly provide more (…) an increased opportunity for feedback for us to maybe (…) change our practice if need be and (…) to differentiate our teaching more so to meet the needs of the student. So that would probably be the number one thing for me as a teacher would be for me to get a better grasp of how I can do my job the best I can from what they’re kind of gaining form it or not getting what I can change to help that.
- Students will experience an overall increased quality of life with increased independence, participation and social interaction. Participant TD noted the changes in student’s life when they are able to communicate their likes and dislikes for the first time. Participant TC envisioned students having the ability to create new relationships beyond their family circle with BMI technology.
TD: (…) benefits communicating [student’s] needs, communicating likes, dislikes (…) even interaction with their peers, interaction with staff (…) all of those. So it’s just a whole new world for them, really.TC: (…) [BMI] can make [students] more independent, it can have them communicate clearly for the first time with their families and other people, not just their families. Their families understand their language (…) their gestures and everything. But to then now open that up to talk to a friend or (…) someone on the street or, whatever (…) yes, I think that is amazing and yeah, could be very beneficial.
4.2.2. Challenges of BMI Technology
- Ease of use and reliability of the technology for students. Some teachers expressed concern whether the technology will be difficult for students to learn and grasp the intention of its function. Participant TD notes the challenges a student may face transitioning to the use of BMI technology to express their needs:
TD: (…) maybe just being able to understand [BMI technology] as well. Here we are taking time to understand and if we get confused and then just think how challenging it is for [the students] to understand and know how to use [the technology]. And time could be a big factor in that as well and (…) even for them to understand, “oh if I can (…) one, I can communicate my needs and (…) what do I know, what do I like and don’t like? You know, how do I say that?” So I think just wrapping their heads around what it’s all about (…) and what they can now do would be different for them (…) or biggest challenge, I guess.
TE: (…) well I think as with any technology, it’s great when it works, not so great when it doesn’t work. So, you’re looking at some frustration maybe (…).
- Ensuring that this technology will be appropriate for the student therefore accurate assessments will be required.As technologies are emerging to support individual needs, implementing the most appropriate technology is important for students with disabilities. Participant TD expresses the challenges of ensuring that students are paired with technologies best suited to their needs and with that requires thorough and accurate assessments:
TD: (…) finding out which device is right because there are such a wide range and there’s always a new latest and greatest thing so finding the right device for that students’ needs and even best assessing the students’ needs as well, what they can and cannot do and (…) being accurate with those assessments (…) and then finding the right piece of equipment and then after that, just being able to use it effectively and (…) being comfortable to teach others that as well (…).
- Students learning appropriate communication skills.By providing a student with a device that will express their thoughts and intentions it does not imply that what is being communicated will be appropriate or deemed socially acceptable. Participant TE emphasizes this challenge as their experience teaching in a primarily behavior focused classroom:
TE: (…) it might open them up to some (…) possibilities that maybe they were sheltered from a little bit as far as communication goes and who they communicate with and (…) an appropriate communication, having to learn that appropriate communication (…) those might be some of the challenges.
- The medical risks involved with invasive procedures.Participant TC expressed this concern of surgical risks from experience of a student in the class who had undergone surgery to implant a shunt in their brain. The rejection of the shunt in addition to the student’s inability to communicate resulted in further impairments for the student:
TC: Yeah, for students, for our kids (…) our bodies reject things sometimes when they’re foreign and our kids lots of times can’t tell us that that’s happening. I had a young fellow who had a shunt in his head and (…) it got infected but there was no way for him to tell us and his behaviour was different and we watched it for a week and reported it home to parents, finally went to the hospital, ends up its infected, he’s got meningitis, hearing loss. So I mean, you know what, that’s major devastation and all of that because of foreign something is in his body and he wasn’t able to tell us. Now that foreign plate in his head was helping him (…) but then there was no way for him to tell us right out that this was going on and so it took too long, didn’t catch it in time and now he’s suffering repercussions. So, in that aspect with our kids, and as well, just sometimes a simple surgery for our kids can set them back and not only (…) like in physical as well as mental skills and, some kids have lost their language after a surgery, so surgery for these guys can be very devastating so it would have to be very, very life changing (…).
TF: (…) definitely safety in terms of surgery or risks that are taken but then also not knowing any sort of long-term risks that could be repercussions down the road because, you know, until you try it and do it and have, I guess a population to follow and monitor and study, you don’t know that sort of thing (…) that could be a challenge for sure.
- Privacy of thought.Among the six participants, one expressed concerns of how BMI technology will ensure the protection of one’s private thoughts:
TF: (…) just in terms of, like, people not having the freedom to decipher what they want shared and what they don’t, like that seems really like an invasion on kind of privacy and personal space and thoughts and what not. That seems like a big issue to me.
5. Discussion
5.1. “Fitting in by Not Standing out”
5.2. BMI Technology
6. Conclusions
Acknowledgment
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Diep, L.; Wolbring, G. Who Needs to Fit in? Who Gets to Stand out? Communication Technologies Including Brain-Machine Interfaces Revealed from the Perspectives of Special Education School Teachers Through an Ableism Lens. Educ. Sci. 2013, 3, 30-49. https://doi.org/10.3390/educsci3010030
Diep L, Wolbring G. Who Needs to Fit in? Who Gets to Stand out? Communication Technologies Including Brain-Machine Interfaces Revealed from the Perspectives of Special Education School Teachers Through an Ableism Lens. Education Sciences. 2013; 3(1):30-49. https://doi.org/10.3390/educsci3010030
Chicago/Turabian StyleDiep, Lucy, and Gregor Wolbring. 2013. "Who Needs to Fit in? Who Gets to Stand out? Communication Technologies Including Brain-Machine Interfaces Revealed from the Perspectives of Special Education School Teachers Through an Ableism Lens" Education Sciences 3, no. 1: 30-49. https://doi.org/10.3390/educsci3010030
APA StyleDiep, L., & Wolbring, G. (2013). Who Needs to Fit in? Who Gets to Stand out? Communication Technologies Including Brain-Machine Interfaces Revealed from the Perspectives of Special Education School Teachers Through an Ableism Lens. Education Sciences, 3(1), 30-49. https://doi.org/10.3390/educsci3010030