Communication technologies are constantly transforming the way we communicate and interact with each other, and with our environment, with its impact affecting everyone including disabled people and the groups linked to them. The brain-machine interface (BMI) is one example of an emerging communication technology envisioned to transform the way we communicate and interact with each other and our environment in the near future. One group targeted to use BMI technology and impacted by others using BMI are disabled people. For disabled people and their families, the impact and implications of adopting BMI technologies is important to understand so they can make informed decisions and advocate for policies governing the technology's application to decrease negative and increase positive outcomes. In this study, we interviewed nine mothers of disabled children, with no prior knowledge of BMI technology, to explore their perceptions and attitude toward the technology. Five main themes emerged from our findings: the potential benefit to aid mothers to interpret their children's needs; the potential benefit to expand a child's social network; the preference for non-invasive BMI approach; impact of BMI use by non-disabled people and cost and qualification barriers.
Communication technologies are constantly transforming the way we communicate and interact with each other, and with our environment, with its impact affecting communities differently. For example, the introduction of the telephone opened communication channels for hearing individuals but created barriers for individuals who were deaf or hard-of-hearing (Lang, 2000). One emerging communication technology envisioned to transform the way we communicate and interact with each other in the near future is the brain-machine interface (BMI) (Clausen, 2009; Sharma & Vats, 2013). The BMI functions by monitoring specific user brain signals and patterns which are deciphered and translated to control an interfacing external device (Garipelli et al., 2008; Milàn & Carmena, 2010) such as: robotic limbs (Demetriades, Demetriades, Watts, & Ashkan, 2010; Friehs, Zerris, Ojakangas, Fellows, & Donoghue, 2004; Hochberg et al., 2012; Mason, Bashashati, Fatourechi, Navarro, & Birch, 2007; Nicolelis, 2001), smart wheelchairs (Birbaumer, Murguialday, & Cohen, 2008; Lebedev et al., 2011; Mason, Jackson, & Birch, 2005; Wolpaw, Birbaumer, McFarland, Pfurtscheller, & Vaughan, 2002), or communication devices (Guenther et al., 2009) through the use of thought (Garipelli et al., 2008; Patil & Turner, 2008). Signals from the brain can be retrieved using invasive or non-invasive approaches (Milàn & Carmena, 2010).
Invasive BMIs involve intracranial surgical implantations. Some studies have deemed the invasive approach as being the most effective for retrieving brain signals and providing the most natural prosthetic control (Demetriades et al., 2010; Kim, Park, & Srinivasan, 2009; Milàn & Carmena, 2010; Tonet et al., 2008). Cosmetically, invasive BMIs are considered to be more appealing and portable than non-invasive BMIs, which come with an external apparatus attached with wires and batteries (Martin, Sankar, Lipsman, & Lozano, 2012). However, the drawbacks of using the invasive approach include surgical risks, infection, unknown long-term stability and user tolerance post-surgery (Birbaumer, 2006; Demetriades et al., 2010; Garipelli et al., 2008; Guenther et al., 2009; Hirata et al., 2012; Mason et al., 2007; Milàn & Carmena, 2010).
Non-invasive BMIs are based on recordings taken from electrodes placed on the surface of the head (Demetriades et al., 2010; Lebedev et al., 2011; Milàn & Carmena, 2010). Recorded brain signals are captured using EEG (electroencephalography) and alternative signals such as: PET (positron emission tomography), fMRI (functional magnetic resonance imaging), NIRS (near-infrared spectroscopy) and MEG (magnetoencephalography) (Menon et al., 2009). Some studies have scrutinized EEG-based BMIs for its lower accuracy in performance, which would not be worth the dedicated time and effort required to train its users (Demetriades et al., 2010; Friehs et al., 2004; Kim et al., 2009; Martin et al., 2012; Nicolelis, 2001). However EEG-based BMIs are commonly used in research and application for their appeal in cost, safety and convenience (Birbaumer, 2006; Menon et al., 2009). Indeed non-invasive BMI are used for various applications such as gaming (Neurogadget.com, 2015).
As research and development advances in the field of human-computer interface technologies, there has been great interest to introduce these technologies for non-therapeutic, public use (Neurogadget.com, 2015) such as introducing Jedi Master-like (from the famed Star Wars movies) abilities to so-called non-impaired people that would otherwise not be possible without the technology. As such, we see a shift in discourse for BMI technology from its initial clinical and therapeutic use to becoming a tool used to add abilities to the human body not yet in existence (e.g. thought control).
One group targeted to use BMI technology are disabled people (Birbaumer et al., 2008; Mason et al., 2005; Wolpaw et al., 2002), with the technology envisioned to increase autonomy and one's quality of life through the "restoration" (Birbaumer & Cohen, 2007) of communication and motility. The narrative around BMI as it relates to disabled people is a medical, therapeutic one (Wolbring & Diep, accepted) and non-therapeutic BMI application discourses are not linked as of yet to disabled people (Wolbring & Diep, accepted). This reality has been identified as a problem (Wolbring & Diep, accepted). This problem identified for BMI is not a new one for emerging technologies. The problem that emerging technologies or scientific products are often oversold with a cure narrative and a limited therapeutic angle in relation to disabled people has been flagged by others (Goggin & Newell, 2005; Yumakulov, Yergens, & Wolbring, 2012).
The envisioned uses of BMI technology have raised various other ethical and policy concerns (Clausen, 2009, 2013; Demetriades et al., 2010; Jebari, 2013; Nijboer, Clausen, Allison, & Haselager, 2011). Some concerns raised include risks involved with human experimentation, specifically with the invasive approach; the ethics of involving disabled people for experimentation; and the unknown long-term stability of the technology (Clausen, 2008, 2009). The coupling of human and machine control has also raised questions on the allocation of responsibility and liability (Tamburrini, 2009). Demetriades et al (2010) states: "The burning question surrounding the use of Brain-Machine Interface (BMI) devices is not merely whether they should be used, but how widely they should be used, especially in view of some ethical implications that arise concerning the social and legal aspects of human life" (Demetriades et al., 2010). The enhancement functions of BMI technology has led to a debate where some commenters have developed arguments that would limit the use of BMI for medical treatments (Demetriades et al., 2010), whereas others have stated that BMI should also be used for non-therapeutic functions (Neurogadget.com, 2015). The advancements of non-invasive BMI have triggered the Nuffield Council of Bioethics to recommend that BMI and other neuro-interventions, for therapy or otherwise, should be classified as medical devices (Nuffield Council on Bioethics, 2013).
Anticipatory governance is a recent concept of technology governance that envisions that impact of emerging technology products, beyond clinical concerns, should be identified and addressed at the conceptual and development stage of a given product with the active and meaningful involvement of the public (Barben, Fisher, Selin, & Guston, 2008; Guston, 2014). BMI is a product still in the development stage. In sync with the anticipatory governance vision we posit that disabled people and groups linked to them are essential for a meaningful anticipatory governance discourse around BMI. The purpose of this study was to explore the perceptions parents of disabled children have of BMI technologies, conceptually, and their motivation to perhaps implement, or not implement, the interface technology for their children.
This is a qualitative study to generate a deeper understanding of the perception of BMI technology as a new way of communication and its impact. Parents of children who were non-verbal, had limited speech, required speech therapy, and/or used therapeutic communication tools in Calgary, Alberta, Canada were invited to participate in recorded, individual, semi-structured, face-to-face interviews to share their thoughts and perceptions of BMI technology. This study was approved by the Conjoint Health Research Ethics Board of the University of Calgary.
Parents were recruited by method of purposive sampling through personal contacts, through principals from two segregated schools for disabled children who assisted in connecting parents to this study, and through one family support coordinator for an association within the city. To be included in this study, parent participants had to be over the age of 18 and self-report that they had at least one child who was non-verbal, had limited speech, required speech therapy, and/or used therapeutic communication tools. Communication with parents prior to the interview all took place by e-mail. Parents who expressed interest in being interviewed were provided with further information about the study. In addition, parents were sent by e-mail, an introductory write-up explaining the high-level functions of BMI technology with a video link demonstrating an individual using BMI technology to control their wheelchair in the lab. At the time of the interview, parent participants were provided with an 'Agreement to Participate' form, which we discussed and participants signed prior to the interview.
The interviews were conducted with a sample of 9 parents (all mothers) who had at least one child with limited to no verbal communication abilities. The recruitment process was not limited to recruit mothers only but targeted parents in general. However, the parents who expressed interest and were also available to participate in our study were all mothers. A demographic summary of the mothers' children within the household is provided in Table 1.
|Number of children in the household||3||2||2||2||2||1||2*||3||2*|
|Number of children requiring communication support in the household||1||1||1||1||1||1||1||1||1|
|Age of child who requires communication support||9||7||11||13||10||12||15||15||16|
|*All children in the household have disabilities|
Data Collection and Analysis
Prior to participating in this study, the mothers we interviewed had no prior knowledge or experience using BMI technology. This study did not provide mothers or their children with a device to use. Although mothers were provided with a written description of the high-level functions of BMI technology along with a video link demonstrating its use in a lab, not all mothers read and watched the video prior to the interview. In these cases, Lucy Diep provided a verbal explanation of the functions of BMI technology; however the video was not shown to these mothers at the time of the interview and instead, the mothers were provided a verbal description of the video.
The interviews were conducted by Lucy Diep over the months of November 2012 to February 2013 with the length of the interviews ranging from a half-hour to 1.5 hours. Each interview session was recorded and transcribed verbatim by Lucy Diep. A journal was also kept to record additional notes and reflections immediately after each interview. To protect the identity of the mothers and their children, mothers were identified in the transcripts as P-0x, whereby 'x' represents the values 1 to 9 in the order that the interviews were conducted. Themes were drawn from the collected data using qualitative methods of analysis for qualitative interviews outlined by Burnard (Burnard, 1991) and validated through peer debriefing with Gregor Wolbring. This analysis generated five themes that present our participant mothers' perceptions of BMI technology and the circumstances that would facilitate or prevent them from implementing the use of this device for their children.
Emerging from the mothers' perception of BMI technology were 5 themes: the potential benefit to aid mothers to interpret their children's needs; the potential benefit to expand a child's social network; the preference for non-invasive BMI approach; BMI use by people without disabilities; cost and qualification barriers. The themes will be described individually in the next sections.
A potential benefit to aid mothers to interpret their children's needs.
The mothers we interviewed had each described various ways they communicated with their child. Much of their understanding of what their child is saying has been a learning process with trial and error. With time, mothers built a knowledge bank of their child's behaviors, interests, likes, and dislikes to the point where they 'just knew' what their child wanted. However, the mothers still expressed a strong sense of need to understand and interpret their child's thoughts and emotions, particularly when their child expressed sadness or frustration and mothers were unable to interpret their child's non-verbal cues. Mothers felt helpless in these circumstances and BMI technology was seen as tool allowing them to "read" their child's thoughts in order to best address the child's needs:
P-03: …I would love to see what's going on in [son's name]'s brain. I would love to see the things I can do for him that he's perhaps feeling and he can't ask…or he's wanting to ask but he can't say…because he doesn't know how to put it into words […]. And when he's sad, like what he's thinking about…because sometimes he'll sit there and he'll cry. And a lot of times he's got a cry for hunger and…when he's really hungry he's got one particular cry. And then sometimes he just gets sad. And then I'd love to see why he's sad…what is it? Is it because he's thinking of something or…what's going on? So yeah, it would be nice.
While mothers learned to interpret their child's non-verbal cues over the years, family, friends, teachers, and other social networks may not have had the same amount of time or opportunity to build a similar foundation of knowledge. Under circumstances when the child experienced stress, frustration, or upset, others supporting the child felt helpless as they were unable to interpret the child's expressions. One mother expressed this feeling of helplessness by a family member who was caring for her daughter one evening:
P-07: …when she [the sister] was trying to…put [daughter's name] in bed…my sister told me [daughter's name] needed something, she was showing something, she was using sign languages, but I'm sure that that sign languages it wasn't appropriate one but 'cuz she knows few, she's using for everything. […] my sister said that she was so upset…[daughter's name] was very mad that nobody can understand her — her need…
It turned out that her daughter was looking to give her father a hug that night as part of her bedtime routine.
A potential benefit to expand a child's social network.
Mothers viewed BMI technology as a potential benefit for their children to participate actively in society as the tool would allow the child to self-express to develop and deepen relationships. The following quote reflects this sentiment as one mother reflected on the communication opportunities BMI technology could provide for her daughter:
P-04: […] I know she loves me 'cuz she shows me in so many different ways […] movement for her is really difficult, so for her to be able to…so gently run her fingers down my arm takes every bit of concentration she has and that's her way of telling me how much she loves me […] so for her to verbalize that […] or say, 'mama', or say my name, you know…that would alter our relationship…and that would alter her relationship with everybody […] maybe that would…help [daughter's name] to have a relationship with people who otherwise wouldn't give her the time of day.
Mothers also viewed BMI technology as a tool providing their child the opportunity to self-express autonomously and communicate their personal wants and needs:
P-04: […] what if there's stuff I'm doing that she hates and I have no idea? What if she doesn't like wearing green [laughs]? […] or she wants to go to the theatre? She loves the theatre, but if I'm not taking her enough […] I think it would be so exciting […] for [daughter's name] to have something and to have that opportunity.
Overall, mothers perceived BMI technology as an opportunity for children who require communicative support to be understood by opening up a new communication channel that allowed their children the freedom to self-express and build new relationships on their own.
The preference for non-invasive BMI approach.
BMI technologies continue to undergo rigorous debate of its affectivity through surgically invasive or non-invasive approaches (Clausen, 2009; Fernández, 2009; Wolpaw et al., 2002). Among the mothers interviewed, there was an overall preference for non-invasive BMI technologies with the exception of one mother who considered using the technology if it required an invasive approach.
The sentiment expressed by mothers toward using invasive BMI technology was revealed along a spectrum: (i) mothers against the idea of surgically implanting a BMI to the brain regardless of its advancement and performance as a low-risk procedure; (ii) mothers uncomfortable with using the invasive approach but were willing to consider the procedure provided it was safe, functional and had a high rate of success among users; (iii) mothers willing to undergo the surgical procedure if it meant providing their child with a higher quality of life.
(i) Mothers without question against the idea of surgically implanting a BMI to the brain regardless of its advancement and performance as a low-risk procedure
At one end of one spectrum, mothers were not in favor of an invasive approach to using the BMI device for their child:
P-07: You know the first…risk I'm thinking about is the surgery…I'm not going through that one…at all…Even…if they […] guarantee it, I'm not going through it.
The mothers on this end of the spectrum felt that the brain was too vital an organ to undergo the risk of surgery for the purpose of using a technological device. For these mothers, the cost outweighed the benefit as they regarded that any complications or damages to the brain would be irreversible. The following quote expresses the sentiment described:
P-02: I will try it [BMI] but not inside to make a surgery for [son's name]…But most of the thing I don't like anything to transplant inside the brain…the brain is so sensitive […] if you hurt any cell it's not coming again…just…damage […] if you want to transplant it in…it can be a lot of problem maybe the body refuse it, there's…effect to injure the brain cells […]there's a lot of thinking to make the surgery inside the brain.
(ii) Mothers uncomfortable with using the invasive approach but were willing to consider the procedure provided it was safe, functional and had a high rate of success among users
For the second group of mothers, having their children undergo invasive BMI procedures required serious cost-benefit consideration. In their experience of raising a disabled child and knowing other disabled children, these mothers expressed that their children have multiple, complex needs that required them to already undergo many invasive procedures. Adding another invasive procedure for their child would require serious consideration and the benefits must outweigh the cost:
P-04: …for a lot of our children, they are so…[sigh]…at the Children's Hospital they need a cart to carry [daughter's name]'s file because her file is this big, like it's a whole bunch of huge files, so what I'm saying is, is that our kids are…constantly being […] handled, they're at the hospital, they're having surgeries, […] they're doing this, they're doing that, […] and so…what would be really great is […] if you developed something where it didn't have to involve […] a hospital trip.
However, mothers were willing to consider taking the invasive approach if evidence through research supported the procedure as being safe with a high success rate:
P-05: […] if somebody has to go into the brain it's always a little scary […] there's always risks with any kind of surgical procedure no matter if it's […] a simple one, down to your complicated heart surgery to your brain surgery […] a lot of these children […] that have disabilities have other co-morbidities as well so you've got to outweigh the benefits, so you've got to look at the risk as far as what the benefits are gonna be […]. There would have to be a lot of education around […] what the procedure means, this is what the complications could be so people would have to be extremely well-versed and well knowledgeable about what could potentially happen […] if they are gonna take that risk. And of course, anybody, when anything's kind of new it would be kind of nice to know if somebody else has kind of […] made that first step…[small laugh]…see how it went for them.
(iii) Mothers willing to undergo the surgical procedure if it meant providing their child with a higher quality of life
Only one mother expressed the willingness to use invasive BMI if it meant providing her child with the opportunity for a higher quality of life. This mother shared an experience where she and her husband were faced with a difficult decision to implement a risky treatment that had a 50 % survival rate. Thankful for the positive outcome the treatment had for their daughter, mother P-08 was willing to take on treatments or procedures if it meant providing her daughter with a higher quality of life. The welcoming use of BMI technology, if it had to be done invasively, by mother P-08 was also influenced by the challenges she had experienced with getting her daughter access to an AAC device, which at the time of the interview, her daughter was still deemed unqualified to use. When asked whether she would consider using the invasive BMI device for her daughter, mother P-08 said:
P-08: We would implant it in her in a heartbeat…In a heartbeat…if it's gonna help…we wouldn't even think twice about it.
BMI use by non-disabled people.
While mothers were welcoming the use of BMI technologies to assist with their child's communicative needs, some mothers found little reason to use the technology for themselves or for anyone they perceived as not impaired. One condition where some mothers considered using the technology was under the circumstance of losing their ability to move and/or communicate as a result of an injury:
P-04: …So if I was in a car accident […] I would need to be mobile. I'd need to be mobile, I'd need to be able to speak, I'd need to be able to see, I'd need to be able to take care of my daughter. And that comes first. So, I guess I would go a long ways […] to be functioning so I could look after my daughter because she'd be heartbroken without me.
Mothers also expressed hesitation with using the device with concerns about the protection of their private thoughts and who would have access it:
P-05: …it's scary because I'm not sure…how invasive things will be […] so who else is gonna have access to this information? Not just with the banking but wherever we go…with technology…as was mentioned before, people hacking in, people trying to, yeah, so…
As mothers viewed BMI technology as a communication tool for disabled children, they were not in favor of the technology being used for entertainment purposes such as gaming (the first NeuroGaming Conference and Expo was held January 30, 2013). The following quote expresses a mother's perception of BMI as an aid and the notion that aids should be utilized for those who require it rather than individuals who have the ability but are using the tool for alternative purposes:
P-03: …if you don't the need the aid, I don't think you should be using it…I don't. It's like, why would you be in a wheelchair if you can walk? People in wheelchairs are trying to get up and walk. So if you have the ability to walk, why are you trying to get in one?
Mother P-04 echoed the same sentiment when she was asked about her thoughts on the use of BMI technology for her non-disabled daughter or for herself. She expressed that it was important to utilize the abilities one already has rather than allowing a machine to do the work for us:
P-03: …If you have fingers and you're willing to do something, get out there and do it — no, you don't need a device for it [laughs] […] all of a sudden all you know how to do is interface with a computer? Well, what the hell are you gonna do when you can't interface with something? People will lose their skills to be able to cope with […] reality, with life […] I hope that doesn't make me sound old, 'cuz you know how old people they're like, 'Oh, I don't want to touch a computer', right? I don't want to be one of those people, but…at the same time, I still want to be functional and useful…regardless of anything else.
In the households with more than one child in the family (n=6), where the sibling was not disabled, mothers were asked whether they would allow their non-disabled child to use BMI technology. The motivation was split. Half the mothers were willing to allow the non-disabled sibling to use the technology and the other half felt it was unnecessary. Mothers who allowed the non-disabled sibling to use the technology saw it as a positive way for the siblings to interact with each other. Mother P-05 added that it would be an opportunity for parents to receive feedback from the non-disabled sibling on the technology's functionality:
P-05: I'd be totally for it because [daughter's name B] very much likes to be like her big sister, so whatever's going on for [daughter's name A] she wants to be a part of, so she actually would probably find it quite fun to sort of, uh…and then the nice thing is she would be able to give you feedback, right?
The other half of the mothers felt there was already too much technology in their children's lives and there was no need to adopt the technology for the purpose of entertainment:
P-01: …if I add any more high-tech stuff into their lives, like for gaming, I would say, 'No way!', 'cuz it's such a battle already to keep them doing normal stuff that kids should do that…I wouldn't.
Mothers were also aware that if BMI technology became more visible and accessible, it could make it difficult for them to control the technologies that enter into their home. Mother P-04 discusses this concern:
P-04: …it's the same when the kids were younger and […] [daughter's name B] wanted everything the next person had, you know, the…and-and-and a lot of kids are like that sometimes, they-they don't understand that what they have is good enough. They're-they're always looking for the better, uh, newest, and […] they don't need it…but they don't understand that.
Cost and qualification barriers.
The last theme regarding access to the technology arose passionately in the interviews. Mothers spoke about their concerns with respect to cost and whether their child would qualify to use the technology.
Cost. When mothers were asked where they would like to see advancements in technology go, some expressed the importance of developing the technologies so that they are affordable particularly for disabled people.
P-01: I think just make…people in general with disability, and especially adults with disabilities just…the cost. I think there's lots of great assistive technology, it's just…being able to make it work for people at a reasonable cost and…that doesn't require a lot of maintenance because they don't have…financially I think that's where it comes down to.
Mother P-03 expressed that the purpose of technology development was to ensure it was accessible to anyone who needed the device; not limited to those who could afford it:
P-03: …And I hope also that they're available to the ordinary person, not just to the rich, but to anyone on the spec-…in life that can have the opportunity to purchase it for the person that they need to. That's what I hope for technology. Not something that's way out there that you can't even afford to, whether you have a child, or you have a parent, or you have someone that really needs something and you can't afford to get it for them because it's there…but you can't get it. So that defeats the whole purpose as well. The thing is, technology has to be accessible, it has to be affordable and it also has to be able to work to benefit the person that needs it. So that's my view on technology. Whether it's for [son's name A] or for somebody else, anyone else in this world, that should be the purpose of it. If you can't even afford to buy it, how's it going to benefit you but you know that it can benefit you…so it's like, it's there, but you can't even get it.
Many of the devices and equipment used to support disabled children are expensive and when mother P-04 was introduced to the idea that human interface technology was moving toward application for gaming and entertainment, she was excited at the prospect. She viewed mainstreaming of the technology as a way to lower the cost and increase accessibility for disabled people:
P-04: …when you compare the gaming industry to wanting to help an individual, they're two completely different things, but one good thing that comes out of that is the gaming industry […] they'll latch onto something and they'll mass produce it, and they'll make that product so cheap, […] and that would be great, because so many things…like that chair right there is for [daughter's name A], it's a thousand dollars…or- or- sorry, eighteen hundred dollars. It-it's a bloody chair! This tracking for me, it probably cost them…you know…maybe…maybe a hundred bucks to make…you know, but […] this was twelve hundred, you know. So what I'm saying is, is that anything special needs is […] marketed very low because there's not a huge demand for it; our […] special needs population is quite tiny. Now if you have the gaming industry that is using something like that, then they'll mass produce it and […] lower the cost […] that's another thing I'd like to bring up, is that a lot of people who have special needs, they can't afford what's out there […] say you come up with something and [daughter's name A] can use it and it's at three thousand dollars, well, do you think health care is going to fund that? Will the government fund that? I highly doubt that. And then you're looking at, okay, based on need. Is [daughter's name A] smart enough to use it? You know, they're going to be evaluating who gets it and who doesn't. So if the gaming industry, [small laugh] this is the only positive I can come out of it is, if they can mass produce it and lower the cost, then everyone has a chance to use it.
Qualification. The last comment made by mother P-04 on whether her daughter would be "smart enough" to use the technology segues into the second concern some mothers highlighted with respect to accessibility. While costs have been a straining factor for families, the possibility that their child may not be qualified to use a product to assist with their communication needs was concerning for some mothers.
The process to qualify for a device includes having the child undergo rigorous assessments using a variety of technological tools, beginning with picture work books and graduating to an AAC device. Children had to show that they had the cognitive capacity to use a communication device in order to qualify for one. Mother P-05 shared her daughter's experience in the following quote:
P-05: …so we went through that [the assessment] […] and then we had an assessment to use…'cuz basically if you're going through [organization name] which is through the Children's Hospital…if you're going through them, then you need to have, um…all of that in place first. So we need to make sure that we've been through all of this sort of low-tech, mid-tech before you can get onto the high technology stuff.
Her daughter successfully demonstrated her ability to function at a cognitive level deemed 'high' enough by the assessors and as a result she was given a 'high-level' communication device to use.
However, mothers P-04 and P-08 shared a different experience with their child's assessments. Mother P-04 expressed that she knows her child is capable of understanding language as her daughter has demonstrated to her appropriate responses when given choices for things that interest her. However, her daughter is not motivated to communicate using the picture symbols or to "Yes-No" word choices that are taped to the top of her tray. For mother P-08, she had observed and has video evidence of her daughter directing play with her therapists when she was a young child and at the age of five, mother P-08 purchased, out-of-pocket, a communication device for her daughter to use at home and at school. Unfortunately, the school did not use the communication device and out of frustration, mother P-08 decided to return the device. When mother P-08 applied for funding for a communication device, her daughter did not qualify as she could not provide assessors with a clear "Yes-No" response. Mother P-08 spoke passionately about the backward progression and the complacency her daughter has likely developed after years of being spoken for:
P-08: This is her biggest road block…that's standing in her way of being efficient. She doesn't have a clear "YES" or "NO". Okay, so uh…to us, she can actually say "NO" and she can say, "YEAH" but it's not gonna happen in two minutes. But…as far as if you hold up the "YES-NO", she'll look…and here's a part of that complacency… '[daughter's name] do you wanna do this — "YES" or "NO"'? She'll back and forth, back and forth. She doesn't give a shit. She doesn't give a shit, right? Whatever! But, she doesn't have a clear "YES-NO" so she can't go any further. She's done. No "YES-NO", can't do nothing with her…But part of it is because people are talking for her, saying for her, telling her what…she doesn't care anymore! […] Like…'yes', 'no', 'maybe so'…you know? But you give her something that grabs her, which is hard to do all the time, she's pretty clear.
Our findings are based on a small and biased sample, which favored parents who were initially interested in our topic of speaking on BMI technology. Furthermore, the findings drawn from this study on the attitudes of parents of disabled children toward BMI technology were also limited in scope to the perception of mothers. While we recognize and acknowledge the richness of the data, perceptions from fathers of disabled children may have contributed a different perspective to this study.
We also acknowledge the limitation of only providing mothers with written and verbal explanations about the functionality of the BMI technology during the interviews. Providing the mothers with visual images of BMI technology in the form of pictures or reviewing the video link shared with mothers from our e-mail communication during the interview would have given the mothers who were limited in their previous knowledge with more information and context of the device. Finally, given the lag time between recruitment and the interview, we were unable to control whether the participants conducted further research on the topic before the interview, which could have influenced their views.
Overall, the mothers in our study were motivated to use BMI technology for their child with disabilities as a way to expand their child's opportunities to participate in society (Light, 1997); however, most were not in favor of using the device if it required an invasive approach. This expressed rejection against taking an invasive approach to using BMI was also reflected in a study by Birbaumer (2006). While clinical studies showed increases in performance of patients with spinal cord injury using BMI devices, the notion of implanting such a device for patients with final stage amyotrophic lateral sclerosis were rejected by 16 out of 17 of the patients in their study sample (Birbaumer, 2006). For the mothers interviewed, BMI technology was perceived as a tool to support the break-down of social and cultural barriers experienced by their child with disabilities by opening up communication channels and expanding their social circle. Therefore, risking these benefits on an invasive procedure that may not be successful was unfavorable to 8 out of the 9 mothers we interviewed.
Mothers were even less motivated to use these devices for themselves. Furthermore, some mothers were especially against the notion of allowing their non-disabled child to use BMI technologies for entertainment purposes. BMI technology was seen as an opportunity for disabled people actively to participate in society, therefore the mothers who dismissed the use of the technology for their non-disabled child did so based on two sentiments: (i) there was already too much technology in children's lives, and (ii) they saw that their non-disabled child as already having abilities that allowed them the freedom to communicate and interact with their social network that their sibling with disabilities did not have. On the other hand, mothers who allowed their non-disabled child to use the technologies envisioned an interactive role between the siblings. Overall, mothers were not convinced that these devices should be used for purposes other than therapy (ie. gaming); they would rather see efforts in research and development applied to assist disabled people.
Nevertheless, perceived opportunities granted by BMI hinged on accessibility to the technology. It is well known that disabled people face financial barriers and while the mothers in our study expressed this concern they also revealed qualification as an access barrier. The question of "Who qualifies?" raises fundamental ethical questions of access and who will be granted access to these devices. While mother P-05 shared a successful experience of her daughter passing her assessments to qualify for a communication device, the experience differed for mothers P-04 and P-08. For mother P-04, the situation was not a matter of whether her daughter understood language or was unable to provide a response through non-verbal cues (e.g. using gestures), but rather her daughter seemed unmotivated to communicate using the systematic "Yes-No" paper symbols taped to her tray. For mother P-08, she has been working to "prove" to assessors that her daughter would be capable of using a device to communicate; that is, her daughter demonstrates a clear "'Yes-No" response.
As mentioned by mother P-04, the equipment and aids used by disabled people are considered to be therapeutic, specialized medical equipment which are then associated with high costs. For mother P-08, purchasing an AAC device out-of-pocket would not be feasible as the device costs between $10,000 to $15,000 CDN. Again, the opportunity for a child to experience self-success hinges on their ability to access the tools and the support they need to do so. Also, in both examples, the children are evaluated using the same system; both needed to provide a clear "Yes-No" response before they can graduate to the next step. While assessments help to ensure that the most appropriate tools are implemented for a child, there was a difference between how the parents interacted with their child compared to the assessment team and what the parents felt was the best decision for their child compared to the assessors. Parents in McNaughton's (2008) study shared a similar challenge in an attempt to implement an AAC device for their children (McNaughton et al., 2008). These examples demonstrate the need for improved access by not only reducing costs, but by developing stronger collaboration between professionals, parents, and children to provide children with the opportunities and support they need to communicate. This importance lies in one's right to communicate. According to the 2013 report released by UNICEF on "The State of the World's Children", it is recognized that "…all children, irrespective of ability or disability, enjoy their rights without discrimination of any kind" (UNICEF, 2013). The report also speaks to the inclusion of children stating:
Inclusion requires society to make physical infrastructure, information and the means of communication accessible so all can use them, to eliminate discrimination so none is forced to suffer it and to provide protection, support and services so every child with a disability is able to enjoy her or his rights as do others (UNICEF, 2013).
We submit that the discourses around how these thought-controlling devices are implemented — whether for therapeutic or non-therapeutic use has important implications. The shift in development of BMI technology from its therapeutic to non-therapeutic application would make its design more multi-functional for public use. In addition, mass production would drive the cost of the product down, making it more affordable. UNICEF echoes this notion stating that access to assistive technologies through universal design "with the aim of making the mainstream work for everyone rather than creating parallels" (UNICEF, 2013) is one of the fundamentals to the inclusion of disabled people. However, universal designs cannot happen without disabled people present in the development stages of the technology and so far, they are not visible in the non-medical BMI discourse. Without the presence of disabled people, 'mainstreaming' will be for the masses not for the needs of disabled people. We posit that the exclusion or underrepresentation of disabled people within the discourse of non-therapeutic application of BMI technology is troubling. The implications are, as referred to by McBride (2011), a "dire consequence" (McBride, 2011). Highlighted by Wood et al.'s (2013) findings on the use of iPads as an AAC among individuals with physical impairments and individuals from a high support residential institution, the dire consequence "relate[s] to the danger that consumers will waste valuable resources purchasing devices and apps that do not meet their needs, the technology may be abandoned, or even worse, could lead to the user abandoning AAC altogether" (Wood et al., 2013).
There is a growing amount of literature drawing attention to ethical and policy matters around the application of BMI technology (Clausen, 2009, 2013; Demetriades et al., 2010; Jebari, 2013; Nijboer et al., 2011). What was striking from our findings was that although the mothers we interviewed raised concerns discussed within ethics and policy discourses such as: privacy, communication as a human right, control, and lack of access due to cost and other barriers, these statements were not conceptually expressed using terminology common in ethics and policy discourse, for example: 'morality', 'dignity', 'beneficence', non-maleficence', 'distributive justice', 'ethics', 'equality', or 'equity'. This is significant, as the very individuals impacted by the advancements in BMI technology are not speaking the same language as policy makers. This language schism has been reflected in other studies interviewing parents (Ball & Wolbring, 2014) and as such is a finding that is not limited to this study. This disconnect of language is also evident beyond parents. One study, investigating the visibility of specific terminology and language used in healthcare policy and healthcare research in the media, found that most healthcare policy and healthcare research terms were in fact, not captured by the media (Wolbring, Leopatra, & Yumakulov, 2012).
This disconnect of language we posit has severe consequences. Parents of disabled children often take on the role of advocate to protect the rights of their child(ren). While the work, effort, and passion of parent advocates have created change, we submit that the progression of change could be more effective and the impact stronger when parent advocates speak the same language as the researchers, developers and policy makers and when researchers, developers and policy makers speak the language of parent advocates. We posit that this discrepancy in language disempowers parents and their advocacy efforts and hinders their ability to gain the knowledge they need to evaluate and respond appropriately to the discourses to lobby for an appropriate solution. We further posit that this disconnect also limits the effectiveness of the policy makers, developers, researchers and ethicists. Sherwin (2011), an eminent bioethicist seems to agree with us when she states: "we lack the appropriate intellectual tools for promoting deep moral change in our society. To find ways of addressing these difficult questions, we need to learn about the levers of social and political change. We probably need also to develop skills in communicating effectively with the public and to engage in some version of political lobbying. In other words, we must develop new types of understanding and new ways of practice" (p. 80). It is suggested elsewhere that one way to connect with people and make the need for changes tangible is to use language that connects such as highlighting ability expectations and the impact and challenges it places on people's day-to-day challenges (Wolbring, 2012). For example in the case of the mothers in our study, we may not expect them to use the terms, 'justice' or 'do no harm' as these terms are too 'meta' but instead use more concrete terms that describe the impact of changing ability expectations linked to new abilities (human enhancement) enabled by BMI, which in turn might impact access to education or employment for the ones not using a BMI. This concrete approach of addressing issues arising and to phrase ones concerns in the concrete changes in ability expectations enabled by BMI might be a way for ethicists to connect with, for example in our case, the mothers. Ability expectation might be the lens that could be useful as a lever of social and political change (Wolbring, 2012).
With respect to the implementation of future technologies, parents should have the right to a sound understanding of the benefits and challenges of the technologies being envisioned for them, and more specifically for their children. We submit the need for proactivity in the BMI field rather than reactivity. Disabled people and groups linked to them should be involved in the governance discourse as it is emerging in order to critically analyze the costs, benefits and impacts of the technology and envisioned application. Disabled people should not just be involved as potential consumers whereby the focus is on making the design work, or just as patients who will 'need' the product as a clinical fix (Wolbring & Diep, accepted); but rather as contributing citizens who will contribute to the broader understanding of the impact of invasive and non-invasive versions of BMI technology for disabled people and society in general.
To reiterate Demetriades et al. (2010) on the use of BMI, "The burning question surrounding the use of Brain-Machine Interface is not merely whether they should be used, but how widely they should be used, especially in view of some ethical implications that arise concerning the social and legal aspects of human life" (Demetriades et al., 2010). We posit the need to find ways to engage parents of disabled children, disabled people themselves and other groups linked to disabled people, before the technology development trajectory is well established. It could be argued that the themes that emerged from our interviews with mothers were not "new." Indeed, they are not; however, the fact that mothers are still voicing "old" issues is indicative that the problem has not been solved and that mothers see the same themes applicable to BMI technology, a new area of techno-advancement.
Moreover, despite the vast research efforts underway for BMI technology development, the mothers in our interview were unaware the technology existed prior to their participation in this study, highlighting a problem with knowledge acquisition. We posit the importance of developing anticipatory mechanisms of knowledge acquisition by mothers, families and communities so that they are able proactively to recognize and understand the implications of the matters that may impact their families, so that they are able to engage in analytical foresight, anticipatory advocacy and anticipatory governance. The study presented here targeted parents of disabled children, however research is underway to investigate the views disabled people who are not seen in clinical need of BMI have of BMI.
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