Summary Notes: Tele Town Hall Notes for Circulation and Ongoing Discussion, December 2, 2016

Summary of Proceedings: Let’s Get it Out There Teleconference Town Hall
October 29th, 2016, 1pm – 3:30pm Eastern

Moderator: Jane Blaine of Canadian Blind Sports

Special thanks to Louise Gillis of Canadian Council of the Blind, Pat Seed of Citizens with Disabilities – Ontario, and Robin East for their behind-the-scenes work on this teleconference session. CCB generously provided teleconferencing services for the call.


– Richard Marion (British Columbia) – He has been involved in blindness and cross-disability advocacy for over 25 years. Richard has seen many improvements in accessibility over the years but at the same time, he feels that the issue of accessibility for people who are blind still needs to gain greater attention by society and decision makers.
– Albert Ruel (British Columbia) – A 60 year old totally blind father, grandfather, and brother, as well as a partner for life to Brenda Forbes. He worked for 19 years in the forest industry when the visual world was available to him, and in the not-for-profit rehabilitation and consumer sectors since 1992 when his vision was perfected to total blindness.
– Melanie Marsden (Ontario) – Has been an advocate for over 30 years. She has a degree in social work which she obtained while raising two boys. She is the mother of three. Personally and professionally, Melanie advocates for safe, effective parenting and believes that when we all work together, acknowledging that each person has a voice, we accomplish more.
– Anthony Tibbs (Quebec) – Has more than six years of experience on the national board of the Alliance for Equality of Blind Canadians, as treasurer and then president, and has served on a number of other boards over the years including Guide Dog Users of Canada and Media Access Canada. With a business and law background, Anthony’s day to day job is as a litigation lawyer, but he continues to support the charitable and not-for-profit organizations that play such an important role to the community.
– Paul Edwards (Florida) – Was born in San Francisco and has lived in Canada and Trinidad. Currently living in the U.S., Paul is a father and grandfather and has been a teacher, rehab counsellor, and administrator. Retired now, Paul derives much pleasure as a volunteer advocate at the local, state, and national levels. Paul is proud of what every blind person everywhere accomplishes every day.

Notice to Readers

The notes below represent a summary of the comments, positions, and anecdotes which were made during the course of the town hall teleconference call. They are not attributed to any particular participant. While the comments have been paraphrased and edited for duplication and redundancy, a conscious effort has been made in the preparation of these notes to ensure that all perspectives on the issues raised have been acknowledged. All views are those of the speakers alone and do not necessarily represent the views or positions taken by any of the panelists, organizers of the teleconference call, or any organizations that any participant or organizer may represent or be involved with.

Question 1: In order to ensure that people who are blind, partially sighted, or deaf-blind continue to have a strong voice in Canada, what do you think the national consumer movement should look like in the future?

Panel Comments
– All consumers organizations need to actively engage with youth to introduce them to advocacy, and give them the tools, networks, and experiences to engage in advocacy
– Many basic needs now better met (thanks in part to technology), so need to determine the burning issues for the next generation
– Need to recognize and acknowledge the history and move on, albeit hard. But as people who are blind and visually impaired, we need to be at the table in a united front and a united voice.
– Find consensus on issues between organizations. United voice is important because when there are disagreements within the community, government and others do not take us seriously or choose to do nothing rather than choose one competing view.
– Organizations must provide some personal benefit to members in addition to advocacy activities
– Must remain independent (acknowledge difference between a service provider and a consumer organization) and have respectful relationships
– Collaboration does not mean uniting into a single organization

– Major challenge is to ensure we can obtain enough financial funding to carry out the organization’s activities. In order to do so, we have to ensure our organizations’ respective mandates are strong enough to put forward to potential funders
o How do we fund what is seen by many as an “intangible” (advocacy)? Organizations have to find creative ways to raise funds, perhaps by providing value-added consumables or services, because the reality is that advocacy is what we do today to improve the situation five or ten years down the road – the results are not immediately measurable.
o Pursuing funding opportunities requires a specific goal. For example, many people with physical disabilities are eligible for direct funding (attendant care), and that program has just been given a significant funding increase. Establishing projects and programs to support blind and visually impaired people may be one way to attract funding
– Question: How have ACB and NFB worked together in the U.S.?
o ACB and NFB in the U.S. are not necessarily a great example to follow because while they sometimes work together and are strong when they do, information exchange, collaboration, and communication do not happen (at the national level at least) nearly as much as they should. At the local and state level there are some stronger ties.
o Setting up systems for continuing sharing of points of view and building consensus is a key to success.
– How do we include youth from various backgrounds (sighted youth/blind parent, blind parent/sighted youth, etc.)?
o With respect to the college and university population, many of our organizations offer scholarships or other programs that touch this population, but we do not offer much beyond that to keep them connected. Need to look at what we can offer these future leaders: networking? mentoring?
– Need to look at other countries and other communities (e.g. women’s movement) where organizations are operating effectively: how did they do it and what can we learn?
o Consider whether this research is itself a fundable (capacity-building) project
o In the UK, there is a model whereby consumers have “taken over” what was originally a service provider organization. How can we move from a “for-the-blind” service agency to an “of-the-blind” service agency?
o In Australia, there is a very strong single consumer organization that provides input at the state and federal level
o In New Zealand, there is a hybrid model
– Multiple Canadian organizations should join together to establish an arms-length advocacy entity to pursue common issues
o CNIB has a new more proactive advocacy program that may help to unite, but in the end advocacy must be consumer-led
– Must recognize and, without judgment, accommodate stratification and the multiple dimensions within the “blind” community:
o vision level (low vision, legally blind, totally blind, deaf-blind)
o newly blinded/experienced blinded/congenitally blind
o retired vs working vs unemployed vs student
o anglophone vs francophone
o independent travellers vs those who rely on other means (ParaTransit, etc.)
o technologically equipped and literate vs others

Question 2: Canada is a small country in population; however, it is geographically quite large. Would it be better in Canada to ensure that, on a national level, there is one organization of blind working on projects and advocacy to help strengthen community activities provincially and locally?

Panel Comments
– The answer is not “one organization” as each organization may be meeting different needs within the community. Working together in a cooperative and collaborative way is more important than the form it takes.
– Each organization should allocate resources (people, etc.) to developing joint position papers that could then be supported by all the organizations that exist in Canada
– Need to strengthen existing coalition-building activities to ensure these can withstand changes in personalities at the coalition table
– Funding and granting organizations are often pleased to see strategic partnerships and collaborative relationships, so there may actually be an advantage to presenting a “united front” across several organizations when applying for such funds

– There are different organizations but there aren’t so many that we cannot work together, and each organization has a very different focus so that there is little overlap.
– The specialization of certain organizations on can be a valuable resource that others can utilize and build upon where needed for advocacy initiatives (e.g. Guide Dog Users of Canada, Braille Literacy Canada)
– For unity to work, each of us must be respectful and non-judgmental about the differing needs of others. Society has imputed an implied belief that in order to be ‘independent’ or ‘successful’ you must do X, Y, or Z perfectly, but as a community we must recognize that we don’t need to be a “perfect blind person” to be deserving of respect and inclusion in the community
o “We must see every person for who they are, and where they are. We cannot judge people by what they can do; we have to judge them instead by what they do every day. Being blind every day can be hard, but it is also something we can be immensely proud of, and we must come to a point where every person who is blind is equally respected and valued where they are, not where some of us think they need to be.”
o Example: not everyone has the same ability (or interest or motivation to develop the ability) to travel wholly independently, or to use a computer for advanced work, and we need to be willing to work with these different skill sets.
o Example: not everyone needs or wants to receive the same type of service in a restaurant setting.
– Education needed about the difference between a consumer organization and a service provider.
o This education has to happen in the blind community, but also needs to involve decision-makers at all levels, so that they understand the very different messages that come from the blind and those who speak on our behalf
o Whenever the issue of the service provider (CNIB) is raised, it is difficult to address because community members seem to be afraid of conflict, punishment. As a community we do not feel empowered.
o Need to be careful about this “consumer organization” vs “service provider” distinction: consumer organizations could very well become service providers
– A service provider has no place doing advocacy and would have no place being a part of any kind of coalition or network of consumer groups.
o On the other hand, the support services that a service provider can offer to a coalition can be very helpful: preparing research documents, secretarial/admin support, funding support
o Ideally we should be sufficiently resourced to not require their involvement
– Any single national organization will need to recognize our linguistic duality which may be difficult. Many years ago, the federal government funded more translation projects that helped national organizations become more bilingual but this has not been a governmental priority for some time.
– Recognize that a national organization cannot meaningfully address local issues. National bodies should focus on national issues (telecom, interprovincial transportation, etc.). However, national organizations should facilitate networking between local cross-organizational groups to advocate on specific local issues (e.g. LRT in Ottawa). At the same time, local experiences should be documented and communicated nationally because issues arising in one city are bound to arise elsewhere, too.
– Public and organizational awareness about the fact that there are multiple consumer organizations within the blind community, and that no single person can speak for all (multiple opinions matter) is required. Organizations which require input from the blind community need to be educated about the array of organizations with which they could consult and the need to consider input from more than one source.
– Grassroots: Any national organization must be respectful of the grassroots and people’s local needs, which might be delivered through chapters and personal advocacy, in collaboration with whomever the local service providers might be
– Education of and to the public sector is an important starting point toward larger changes

Question 3: National, provincial, and local organizations have tried working in coalitions. Are you aware of any activities that these coalitions have done? Would you support a more formal working relationship between the existing national organizations of the blind?

Panel Comments
– There are rooms for coalitions at all levels of advocacy (local, provincial, and federal – e.g. government contacts).
– Experience in the US has shown that bringing everyone into the room, including any proverbial elephants, works best in the long run. But for this to work effectively, the service provider must be a true member of the coalition and be committed to standing united with the coalition viewpoint. This is particularly true where a service provider has a powerful voice to decision-makers and a powerful voice to the public.
– A formal working relationship and agreement to participate in a coalition on a specific issue works best to ensuring continued success even as representatives and personalities change
– Active participation and support of cross-disability initiatives and undertakings can help to foster supportive networks that we can then call upon when advocating for the blind community

– Common issues that we can likely all agree need to be addressed:
o Employment, whether that is being trained, skilled, employed, self-employed, entrepreneurship – there are great opportunities to forge collaboration. Universities do not necessarily prepare the blind for employment. In the US there are dozens of organizations with the overlapping goal of facilitating employment and entrepreneurship for the blind. Why not here?
o Rehabilitation service delivery models. DASM (Developing Alternative Service Models) was a report done by BOOST many years ago. If we want to change how rehabilitation services are provided in Canada, we need to present viable alternatives and working together to consider what those models may look like would be a first step forward and may dovetail with defining the future role of the consumer movement.
– Benefits of coalitions (uni-disability and cross-disability):
o Enabling organizations to come together over clearly defined issues
o Develop goals and objectives in the advocacy sphere
o In a cross-disability context, this also helps different communities learn about the needs of others (so that advocacy initiatives intended to help one community do not inadvertently undermine accessibility for another)
o Differences between organizations and viewpoints can be worked out behind closed doors, away from the public eye
o Organizations can then speak as one unified voice
– Cross-disability coalitions can be powerful provided that (1) the blind community is prepared to effectively present our positions and needs, and (2) the blind representatives are willing to fight and stand up to have our needs given the same priority as others. If we are to be expected to support other groups, they must support us.
– Networking (meeting to discuss and propose solutions to specific issues) solves problems when we are working with other entities and are not at cross purposes, without losing any individual autonomy in the process. Example: When the Ontario government cut funding for the O&M training program at Mohawk College, BOOST initiated a meeting with all the different organizations and proceeded to network (which was the word used with the media and the service provider). The result was a continuation and extension of the funding.
– Question: Should a blindness-specific coalition be restricted to member organizations that have at least 80% of their governing body be blind or partially sighted individuals?
o Regardless of the number chosen, in a coalition of consumer groups, by definition most consumer organizations will meet such a requirement. However, there can also be a need for expertise, resources, and information from outside of our own sphere of what we have and can provide to such an initiative. Cutting out organizations by bright line rules risks losing out on expertise and feedback.
o This would be nice to have, but it isn’t necessarily a requirement particularly on an issue-specific coalition. There are a lot of cross-disability networks and coalitions which have been very successful (e.g. AODA Alliance and Barrier Free Canada, each of which have a mixture of consumer organizations, service groups, etc.). Service organizations do have a level of expertise they can bring to that, as well as administrative resources that the consumer groups may not have.
o Bringing on board other professionals and entities in the blindness or disability field, even though they do not meet the criteria as indicated, may be important on specific issues.
o Being a ‘member’ and ‘involved’ in a coalition does not necessarily make one a ‘voting’ member: service providers could participate and support without setting coalition direction

Question 4: Why do you think the blindness community is so fragmented in its approach to advocacy and community activities?

Panel Comments
– “Fragmentation” is likely not real when it is applied to specific issues. If we coalesce around making change and building coalition as core values, the fragmentation that exists across organizations will become irrelevant.
– As discussed above, accessibility needs across the “blind” population vary considerably (to say nothing of those who may have additional needs beyond blindness). In a group of ten blind restaurant patrons, one might well need a sighted reader as well as large print, high contrast, braille, audio, and e-Text menus to accommodate everyone’s abilities or information access preferences.
– We lack the singular community identity of “blind”: we use many different euphemisms to describe “blindness” (blind, visually impaired, partially sighted, etc.). Should we refer to it as the ‘blindness spectrum’ instead?
– “When two blind folks get angry with each other, a new organization is born.” We lose focus and get tied up in ego and mistrust and we see disagreements on issues as an ending place. We need to view our disagreements as a starting place to find common ground, build trust and respect, and check our egos at the door.
– Funders want people who present a united front, who will be working together with other organizations to achieve more.

– Is there really fragmentation? To be sure, we are diverse and have diverse needs, but perhaps the community is not truly fragmented.
– New communication mechanisms offer new opportunities to overcome geographic fragmentation, if we are willing to work with it and make an effort to make it work for us
o Online streams (e.g. ACB Radio) and podcasts represent a new frontier that we could use to build consensus in Canada if organizations can work collaboratively together to create programming
o E-mail has sometimes not served us well as a community, as it is too easy to put a literal understanding on the written words and adopt contrary positions (or the mistaken belief that there are contrary positions), rather than working through to find commonality
– We need to build more “blind pride” into the very core of our being, and more use of the word “blind” (to include the various levels of visual impairment) so that we do try to unify ourselves.
– This may be a difficult sell to older individuals who are losing their vision. Education is needed on the range and the spectrum, but whether describing everyone as ‘blind’ will succeed at uniting us.
– In 1975, the Cuban government said to the disability community, “this is your revolution so get organized”. As a result, the president of each national disability group has a seat in the national assembly, and blind people are integrated in every level of society as a result. The Canadian disability act consultations represent the closest chance we’ve ever had to a revolution of our own in Canada.
– Some years ago, there was the formation of the Consumer Access Group (CAG), which was hoped to bring, particularly, consumer organizations closer together. What CAG doesn’t appear to have found is the one burning issue that will motivate all these organizations to move in a single direction
– We need to get away from the “shackles” that prevent forward progress: the one agency (CNIB) that is perceived as being “in charge” of all the names and addresses of blind people all over Canada.
o Federal government dollars flowing to CNIB for its Ottawa office, which has no business “advocating” for the blind, really ought to have gone to consumers to make resources happen to the consumer movement
o In order to get funds from the federal government, it should put in place programs that demonstrate its attempts to reach out and include the consumer organizations and consumers.
o The perception that the ‘service provider’ is a risk or fragmenting force varies by province. In Quebec, where rehabilitation services are provided by the government, there is less of a divisive stance
– Fragmentation, if it exists at all, can be overcome by inclusive advocacy that is done for all, with the whole community in mind, including those with other disabilities
– Important to recognize that we are not all, individually, experts on everything – network is important to have individuals we can refer to for specific situations and needs (overcomes fragmentation)
– Egoism, lack of respect and unprofessional behaviour between advocates limits our ability to move forward, and it is time for the community as a whole to step in and implement zero-tolerance policies toward that behaviour.
– Inclusion and universal design must be accomplished within our organizations. People have different styles of approaching advocacy and different skill sets, and we have not (as a community) necessarily been very accepting of different approaches.
– Must recognize that people who are newly blinded often feel a great deal of shame about their vision loss, thanks to the prejudice that courses through our society about blindness. If we can help to make it “ok” to be visually impaired, “ok” to be blind, in the eyes of the greater community, and begin to collect those people into our group rather than having them hide in the closest by themselves (unaware of resources and possibilities), this could help to unify and grow our advocacy community.
– Peer support activities, such as GTT-style groups, bring together a diverse group of individuals with varying skill sets and backgrounds over a common uniting theme (technology) to allow information sharing and learning, which should help to narrow technological gaps in the community
– A coalition can be a coalition of three people. We need to build the organizations just the way they are for now, and once we have a critical mass of people in the organizations, then the organizations can get together and work.
– Some fragmentation exists in that there is a gap in service and attention to those between perhaps 25 and 60 who fall above the reach of “children and youth” programs and below the reach of “seniors” programs, but who nonetheless have a wealth of information, experience, and skills to contribute