2004 Summer Institute : Final Report

Friday, June 18, 2004

Introduction: Deborah Stienstra

Deborah Stienstra introduced the final afternoon session as an opportunity to discuss the directions that the Dis-IT research alliance will take in the next year, and to create a sense of how next year's institute will be structured. She described the research alliance as having a fluid agenda with an evolving set of relationships and an evolving research agenda. She invited a panel of consumers, activists, peer support workers, students, government, and industry representatives to reflect on the questions: "what have we discovered?" and "where do we go from here?" A group discussion following the panel included general comments and reflections. The second half of the session brought comments from Alan Roulstone and the remaining theme leaders and co-directors of the Dis-IT Research Alliance.

Panel presentations

Panelist: Mike Schenkeveld (Independent Living Resource Centre, Winnipeg)

Mike Schenkeveld identified three factors that are integral to developing accessible ITs:

1. Government. He identified legislation as important: "having the Government support and believe in this type of movement will create awareness and an opportunity for all community members to become full citizens."
2. Economic. He suggested that the private sector be used as a valuable and natural resource to assist people with disabilities: "When I look at tapping into the private sector, I think integration is really important." He suggested that the private sector could help to create positions and opportunities in the marketplace for people with disabilities.
3. Education. "We have to make sure that when we're implementing new technologies, and I speak as a consumer, that we have to make sure that people know how to use this technology."

He suggested combining these three areas in order to shape new technologies that are accessible to people with disabilities. He stressed the importance of continuing to consult with consumers throughout the research: "What I hope happens in the future is that consumers like ourselves continue to be invited to such groups so that we are continuously being able to share what we are seeing in the community, what we see happening in the community with regards to what consumers' needs are."

Panelist: Shane McKenzie (Independent Living Resource Centre, Winnipeg)

Shane McKenzie's presentation expanded Mike Schenkeveld's (Independent Living Resource Centre) discussion of the three areas of government, economics, and education. McKenzie stressed the need for the participation of people with disabilities in all of these areas. He reiterated comments made by Laurie Beachell (Council of Canadians with Disabilities) earlier in the institute. "Historically, the disability community has not argued the business, or economic side of things well. We just never have done it. I think there's room there for the development of strategies to make us better at doing that. I think that's where partnerships between all three of those models [governmental, economic, and educational models] come into place." He emphasized that the disability community could benefit from learning how to better advocate to industry.

He suggested that the Dis-IT alliance could look to the environmental lobbyist community as an example of how to infiltrate government, the private sector, and education. He described how the environmental industry "has managed to meld those three-the governmental, economic, and educational models-into a very successful method of raising awareness, and actually has turned into quite a money-making enterprise…They have been able to lobby government for legislation. They have been able to get into the private sector in terms of coming down from the government with tax incentives and things of that nature, as well as the production of things like blue boxes, which we never would have seen 25 years ago. Educationally, the 'green theories' are being taught everywhere from primary school all the way up to graduate degrees. …Whether we can take cues from that, I'm not sure." He ended by stressing the importance of involving the disability community in creating a strategy for partnerships amongst government, industry, and education.

Panelist: Lindsey Troschuk (Student, University of Manitoba)

Lindsey Troschuk noted that one of the key barriers that came up during the institute was that there are many people with disabilities who are not online, that there is a digital divide, and that there are no statistics in Canada to confirm how many people with disabilities are online, or use IT. She stressed, however, that there are many people with disabilities who are online, and that it is important to further engage those who are participating in the virtual world: "One of the things that we can focus on in the future is how to embrace the community that is already online in order to get people further engaged."

Troschuk also mentioned that technology need not "lead the way," and that people with disabilities can help to determine which technology is used and how: "Technology doesn't have to determine the path that we go down-we determine the path that we go down, what technology we're going to use, how we're going to use it." She listed the DisAbled Women's Network of Ontario (http://dawn.thot.net/), the Learning Disabilities Association of Canada (http://www.ldac-taac.ca/), and Mood Disorders Society of Canada (http://www.mooddisorderscanada.ca/) as examples of how the disability community is using technology to self-advocate.

Panelist: Steve Jacobs (IDEAL Group, Inc.)

Steve Jacobs began by commenting that the ultimate objective of the summer institute and the Dis-IT Research Alliance is to increase the ability of all Canadians, including those with disabilities, to use and benefit from new technologies. He outlined how each Dis-IT research theme-employment, e-democracy, retail and public services, and e-learning-cannot reach its full potential without the support of industry. Jacobs asserted that the alliance must make a concerted effort to reach out to industry: "We should not expect them to see things on our terms. We need to understand what makes industry tick, take the great work we're doing, and present it back to industry in terms that they understand, like designing more competitive products and services. This ties to their bottom line, creating new markets, hiring the best employees for any particular job regardless of a person's physical abilities, increased exports, valuable business-focused research." Jacobs thinks that the work of the alliance will be successful if industry is engaged and industry can be proactive as a participator and supporter. He suggested educating industry online and to engage Industry Canada, along with industry in the research process.

Panelist: Lawrence Euteneier (Industry Canada)

Lawrence Euteneier discussed a consultation by the House of Commons Special Subcommittee on Disability that was done online in attempt to reach people with disabilities across Canada: "They weren't trying to get around advocacy groups, they weren't trying to 'cook the process,' they weren't trying to get a predetermined output from this consultation. They just wanted to get a sense of what people were thinking [about the Canada Pension Plan] without it being filtered, and get it directly from all regions of Canada. They wanted to use that experience to grow and show it as a best-case practice for other committees in the House of Commons." He discussed the need for consultations and a sense of ownership by the public regarding programs and initiatives, and the need to educate the public about the issues and ideas that are being proposed.

Euteneier also commented that the Government of Canada is increasing its on-line presence. He stressed again the need to know how many people with disabilities are, in fact, online. He asked the questions

• How do we reduce the digital divide in Canada?
• How do we address fear of technology?
• How do we improve literacy skills required to use technology?

He added that there are many people with disabilities in Canada who have both low computer and low literacy skills: "If we don't find a way to bring these people into the information era, into the knowledge economy, those people are going to be further and further excluded from the economy, and further and further excluded from society as it shifts more and more into an online environment."

Discussion

Gary Birch asked the panelists for strategies on how Dis-IT can strengthen or maximize its relationship with the Government of Canada. The responses sparked an important discussion about how ITs have both the potential to further marginalize but also to provide new opportunities for people with disabilities in terms of online consultations and full citizenship.

Lawrence Euteneier (Industry Canada) asserted that the federal government doesn't hear enough about the role and importance that IT plays, or could play, in the lives of people with disabilities: "They understand transportation, housing, employment, and education, and those issues, because they've been around for years and decades. …They need to know that for people with disabilities, the internet technology is not an option. It is essential. When people adopt that technology, it revolutionalizes their lives."

Laurie Beachell (Council of Canadians with Disabilities) agreed with Euteneier, but cautioned that many people with disabilities could be further marginalized if all government consultation with the disability community were to be done through IT:

"There is also a sector within our community that are not going to be, in the foreseeable future, served by any of this technology. And they are going to be further marginalized if we put all of our solutions into consulting with people through technology. For some, without the personal interface, and an actual body that connects with them, you will not get feedback. And I caution all of us: this project is tremendously exciting; it has tremendous potential, but there is a hierarchy within the disability community of who is actually getting supports and services. And there are those that, for multiple reasons, are more marginalized, and this technology is not going to be the solution. It would be the solution if they could actually access it, and if we had unlimited resources to invest in the supports for those individuals. …We have to recognize that within our organizational structures, and I include CCD in that, much of the leadership are advantaged, much of the leadership have resource and skill and capacity and education. Many of those who are not necessarily connected to our organizations, or to any of these consultations, are people who are absolutely still isolated, and institutionalized, in some instances. And there are certain sectors within the hierarchy, particularly those with cognitive impairments or mental health concerns, etc. that are further stigmatized and isolated for a whole bunch of other reasons, that we're not going to solve by technology either. So when I think that some of the people that we are trying to hear a voice from-let's not think that websites and chat rooms and email lists and listservs are going to create greater access for a lot of these people, because they aren't going to be participating."

Deborah Stienstra (University of Manitoba) responded to Beachell's caution: "I'm curious-do we even know how many people with disabilities and which people with disabilities are accessing the web? And how come we don't know? How come the government is not finding out that information for us if we don't know it?" She then suggested that Beachell's comments are based on thinking of technology as it exists right now:

"Part of what our alliance is intended to do, is to say, 'what would it take to engage people from a variety of backgrounds, using IT?' One of the marginalized groups that [Beachell] talked about that could be further marginalized by IT are people with mental health disabilities. [However,] in recent interviews with that very population's organization, their response was: 'do you know how many hits a day a website on mood disorders get? It's in the tens of thousands per day.' Because people want to know more about their situation, not having to go to the experts, but becoming self-knowledgeable. They want to have peer support. Families want to have support. Some of those communities see a way of using IT."

Euteneier also responded to Beachell's comments by asking: "If we don't put more emphasis on this, and as technology continues to reshape our society, what's it going to mean for everybody with a disability? Not just the ones that are marginalized now, or on the cusp, or just barely getting by, but in general. Is it going to shift people one way or the other? Is it going to change? That's what I'm interested in knowing."

Gary Birch (Neil Squire Foundation) addressed the issue of disability supports: "I think the disability community has been very clear that part of disability supports is to ensure that the appropriate technology-not second-hand equipment, but the appropriate technology gets appropriately delivered. …There is a real potential that the technology itself can marginalize because it's not rolled out in an accessible format."

In response to Beachell's comments, Steve Jacobs commented that:

"As each of us identify ways that new technology can help people, I think we have a responsibility to identify the people it can't help. If we're creating awareness, if we're establishing links to government, to the community, to industry, and we only talk about the great things technology does, we could inadvertently create a larger digital divide, and misrepresent what the truth is. And in the same effort, when I talk about how great technology is, maybe I should talk about who technology can't help today, and why, and what needs to happen to make it happen. And I think if we do that as an organized, concerted effort, we can make some kind of an impact."

Key question: What would it take to recognize the potential for increased marginalization for people, including people with disabilities, in the development of ITs?

Don Shackel (Manitoba First Nations Education Research Centre) stressed that poverty and privilege are important factors to keep in mind:

"I constantly move between these two worlds of-not affluence, but of privilege-and I look at what I can afford for my son, and what the majority of people who I work with on a daily basis can afford, where half the houses in many of the communities don't have electricity or running water, let alone access to technology. Whenever we talk about technology I think there is the danger of it becoming elitist, and further marginalizing."

In response to Shackel's concerns about further marginalization, Deborah Stienstra (University of Manitoba) suggested asking the question another way: "To prevent us from falling into either a victimization mode or an 'inability to move' mode is to say, 'what would it take to recognize the potential for increased marginalization, what would it take to bring that population there?'" Stienstra listed the following "bits and pieces" of discussions throughout the institute that are positive examples of addressing the danger of further marginalization:

• free and inexpensive software (www.adaptech.org)
• recycling hardware
• providing spaces that are public but safe for certain populations for using IT
• adding intimate "face-en-face" human supports

She concluded: "To me, those are the pieces of creating something that would address the question, 'what would it take to recognize the potential for increased marginalization?'"

Lindsey Troschuk (Dis-IT Research Assistant) recommended a study on aboriginal connectivity both on and off reserve: http://www.aboriginalcanada.gc.ca/connectivity

Key question: How do we perceive technology? What is our emotional reaction to technology? Are we open to it? Are we afraid of it? Do we resist it?

During the discussion, Deborah Stienstra remarked that "What isn't here [in this discussion], is something that Jacquie [Ripat] brought up much earlier in the week, around the emotional content around technology. …It isn't just a 'skill thing,' sometimes it's an emotional thing. It's our engagement, how we perceive technology, how we come to it."

Lawrence Euteneier echoed Stienstra's comments: "There's not a lot of openness amongst people, who don't currently use technology, to embrace it. It's not a matter of putting boxes and wires out there and making them accessible. That was the typical solution that the government has taken to make Canada the most connected nation in the world."

Gary Birch (Neil Squire Foundation) talked about the Neil Squire Foundation's Computer Comfort Program, which provides people with a non-threatening environment to become comfortable with technology. He added, however, that this program is difficult to keep funded: "The reason why government often doesn't want to fund it, especially more recently, is because they see it [as] so far-removed from getting people into the work force. And yet we see it so classically as the initial step."

Tanis Woodland (University of Manitoba) stressed the need to address people's fear of technology: "A lot of people are very afraid of computers. A strategy has to be developed for teaching persons to use technology whether you have a disability or not. People come away not knowing still how to use the machine. They say 'well, I got training, but they just showed me how to do it and I don't remember.' It comes down to attitudes and teaching strategies for those supports."

Discussion: What is a key message from the Dis-IT Research Alliance?

Mary Frances Laughton (Industry Canada) suggested and has already begun to convey the following message: "ICT is an enabler, particularly for people with disabilities, and mainstream industry should understand that people with disabilities have the same needs as everyone else, and that standards should be accommodated by industry."

Rajesh Malik (Dawson College) suggested that it would be better to focus on inclusion rather than accommodation. Responding to his comment, Laughton added the importance for the Government of Canada to be aware of the following:

"We need to purchase the platforms that are receptive to the assistive or adaptive technology that people need and we have to be cognizant that at any point in time, one of us could be joining this employment equity group. This is the only employment equity group that is open to all. We need to remember that when we are buying gear and setting up offices and putting buildings in place, that at any point in time, those offices and that gear could be being used by somebody with a disability and that therefore an accommodation may be required at some point."

Key Debate: Does the key message from the alliance need to stress accommodation or inclusion? Is inclusion more consistent with a social model of disability?

General Comments/Suggested Resources

Delphine Kinvig (University of Manitoba) emphasized the following key points:

• Knowledge dissemination is crucial.
• Disability organizations need to form a common message about IT in order to lobby government effectively.
• Education and training about accessible IT is important.

Mike Schenkeveld suggested peer support as a resource: "We have a lot of peers out there, people with disabilities who know about technology, who are scattered throughout Manitoba. We can team up peers with peers who want to know about technology. We're saying we don't need professionals. We're saying we can actually use what we already have."

Caroline Polak Scowcroft (Graduate Student, University of Manitoba) recommended a document by the World Summit on the Information Society (WSIS) as a resource. She read Principle 7, Principle 10, Principle 13, and Principle 14 from the "Declaration of Principles" from WSIS's Geneva (2003) phase: (http://www.itu.int/dms_pub/itu-s/md/03/wsis/doc/S03-WSIS-DOC-0004!!MSW-E.doc)

Lawrence Euteneier discussed a program that his department has been piloting in the last few years that is funded by Youth Employment Strategy funding from Human Resources and Skills Development Canada (HRSDC), which they put out to communities to hire people with disabilities from the ages 16-30. The communities were given the tools and accessible formats to train these people with disabilities to use Web-4-All technologies: "It was just amazing how many people, first of all, had their first job experience. And secondly, how many of them went on to other jobs after that, because they got some computer skills for the first time. …We're hoping to expand that initiative."

Susan Gibson (Multiple Things Training and Art Connections Inc.) commented on the discussion from her perspective as an artist, mediator, and adult education trainer: "There is a place for art in the discussion of disability; there is a place for art in the discussion of IT, I'm not sure yet if there is a place for artists with disabilities in the discussion, we'll work that through." She also discussed her reactions to the discussion from the perspective of a trainer in adult education and addressed her concern about poverty and accessibility: "Often when you're sitting on the front line, you're making judgments about the academics that are having these discussions. …There's got to be a way, as a person who does counseling and connecting, there's got to be a way of addressing some of those issues that we're talking about in terms of the barriers that are not just between someone sitting and teaching a class at university and someone who is living on a reserve. …How do you make sure those issues of accessibility are there, make sure those voices are heard in the consultation?"

Laurie Beachell (Council of Canadians with Disabilities) emphasized that is important to note the immediate impact that the Dis-IT research alliance is having on making IT more accessible:

"The University of Manitoba will have to become more accessible to house the website for the [Dis-IT] alliance. As we are working through other institutions, SSHRC (Social Sciences and Humanities Research Council of Canada) itself, who funded this program, will have to become more inclusive, because they funded it, in order for them to share the research outcomes of this within their networks. …As long as we also pick them off one at a time, and not forget the immediate opportunity right in front of us, so that we don't miss those immediates as we struggle with the long term. Because we can make those immediates more accessible and more inclusive and more open as we go along."

Closing panel

Panelists: Alan Roulstone (University of Sunderland), Gary Birch (Neil Squire Foundation, Leader of Dis-IT Retail and Public Services Theme), Gary Annable (Council of Canadians with Disabilities, Dis-IT Community Co-Director), Deborah Stienstra (University of Manitoba, Dis-IT Research Co-Director)

Panelist: Alan Roulstone (University of Sunderland)

Alan Roulstone reviewed the key comments made during the institute around the nature of new technology and technology generally, and then more specifically around education, employment, governance, and industry. He offered the following general comments:

• He asserted that technology is decidedly not neutral: "New technology is saturated with social meaning. …It is made by people for people with a set of social values."
• "It is important to capture the diversity of the experience [of people with disabilities]," including class, gender, multiple and varied disabilities.
• "It's our social and economic system that shapes the technologies that we choose."
• He commented on the exciting and yet risky nature of cross-disciplinary work: "I think getting insights from other disciplines and other areas of academic, industry, disabled people, is probably one of the most energizing experiences you can get."

Roulstone read from ex-British Prime Minister Harold Wilson's famous 1963 speech, "The White Heat of Technology." Roulstone highlighted the way in which Wilson discussed new technology within a social and economic framework, connecting society and science.

Roulstone offered the following specific comments regarding terms of employment, people with disabilities, and IT:

• "You cannot look at new technology, disabled people, and employment without understanding the law in some detail."
• "You've got to understand the dynamics of the workplace of disabled people. New technology can enable disabled people in the workplace, but…attitudes can negate and wither the benefits of new technology. …What are the limits, what are the facilitators?"
• "We need to understand when things are working well, and how best to present 'best practice' in new technology. …It's just as important to understand how [disabled] people do get on with new technology and how."
• There is a "lack of ongoing support in the workplace." He emphasized the importance of providing support to people with disabilities in the workplace in addition to providing the enabling technology: "The ongoing support of disabled people is enormously important."

Roulstone offered the following specific comments regarding education, people with disabilities, and IT:

• Online learning is now "taken for granted" in post-secondary education.
• Online learning "has not been planned around disabled people and inclusion."
• There are "enormous challenges" in making online learning accessible to people with disabilities.

He offered the following summary of governance, people with disabilities, and IT:

• "ICT and the socio-economic position of people" is important to consider, and connecting with the most excluded.
• Regulation is important in the role of government and business.
• Many exciting initiatives are going on in provincial and federal government.
• "The coordination [of regulation] is difficult. It often leads to a lottery of provision, a lack of joining up of policy not because of nasty intent."

Finally, Roulstone offered the following comments about industry, people with disabilities, and IT:

• Business could be enlightened by looking at enabling technology.
• We should learn from the past: "Looking at specific corporations is valuable, and we should look at how when that has worked, how it worked."
• "Industry is not rational. The market and industry doesn't always work in a rational and humane way. And disabled people, trying to find their way through an industry, is still extremely difficult."

Roulstone closed by saying that he feels optimism from the interdisciplinary work of the summer institute: "I think there's far more scope for optimism than pessimism, far more. But I still take my [umbrella]."

Alan Roulstone's bibliography.

Panelist: Gary Birch (Neil Squire Foundation, Leader of Dis-IT Retail and Public Services theme)

Gary Birch discussed the following overall highlights of the summer institute:

• "Very rarely do I participate in a forum where I've seen the engagement so evenly spread and a real diversity of views. It's been very fun to be part of that, very educational."
• The opportunity to have industry at the table and to make a genuine connection and partnership with industry is very exciting.
• It is important to build existing partnerships and create new ones.
• "The better we can understand industry, the better they can understand us."
• A common vocabulary is key in this kind of interdisciplinary work.
• "The [Dis-IT] alliance can be part of the process of articulating a very carefully crafted, focused message that will go to government and probably to industry, and…to the community to use that message to push for change."
• "As a research alliance we need to disseminate our research results widely and really be models of doing it in a creative and effective way and really modeling accessibility."
• It is important to remember poverty when pushing for disability supports, perhaps in the way Dis-IT does its research and articulates its key message.
• He agreed with Shane McKenzie (Independent Living Resource Centre) "that we've got something to learn maybe from the environmental movement."
• "When we do the disability supports initiatives, it's not just making sure the technology is there, but it's making sure that they're delivered appropriately with the appropriate supports and the appropriate 'human touch.'"
• In terms of a key message, "inclusion, using that as our rallying point, this is all about including everybody. Technology has its role to play in ensuring that people are included and are full citizens."
• It is important to pressure federal and provincial governments to get going with their procurement policies: "Mary Frances [Laughton, Industry Canada] has developed an excellent tool kit. I hope that all departments will pick it up and make it not just a nice thing to use if you feel like it, but actually make it a requirement." (Government of Canada Accessible Procurement Toolkit: http://www.apt.gc.ca/)

Panelist: Gary Annable (Council of Canadians with Disabilities, Dis-IT Community Co-Director)

Gary Annable discussed the following overall highlights:

• "I've been astonished at how few barriers there have been between audience and presenters. To me, some of the most innovative thinking has come from the audience."
• "I see industry as key right now. …I'm going to be working with our current partners to attempt to expand Dis-IT's industry representation."
• Annable found Monday's afternoon session pivotal. He thanked Laurie Beachell (Council of Canadians with Disabilities) for reminding the Dis-IT researchers not to focus only on the most privileged minority of people with disabilities: "We have to be careful about getting seduced by the 'coolness' of technology and always be vigilant about who is going to benefit and who is not going to benefit."
• Annable stressed the importance of face-to-face meetings among researchers and partners: "That opportunity has been really energizing."

Panelist: Deborah Stienstra (Dis-IT Research Co-Director, Leader of E-Democracy theme, University of Manitoba)

Stienstra commented that prior to the institute, the alliance network and partners seemed like a skeleton with limbs in different parts of Canada. The institute provided the opportunity to bring flesh and blood and breath to the skeleton; she emphasized the importance of bringing together the theme leaders and partners face-to-face. She felt that during the institute, the participants have "been able to make real something that will continue," and that the Dis-IT alliance is beginning to develop a framework for understanding disability and IT and the direction in which the research is going.

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