Let’s Get It Out There

Tele Town Hall Committee Consultations

October 2016 to March 2018

Final Report

August 17, 2018

Introduction:

In 2016, a question was asked on the member discussion list hosted by the Alliance for Equality of Blind Canadians about the AEBC and the Canadian Council of the Blind merging. The resulting discussion from this simple enquiry resulted in a group of individuals looking for methods to improve relations between blindness, low vision and deafblind organizations in Canada. The goal of the “Let’s Get It Out There” project was to take a holistic view of issues around advocacy, respect and working more closely together. Although there have been previous efforts at coalition building, this was an opportunity through a Tele Town Hall consultation process to receive feedback and suggestions at a grass roots level. See the Tele Town Hall Committee Mission Statement appended to this report.

In Canada, our history of people who are blind, partially sighted and deafblind working together is not that different from other countries. The main thing that makes Canada different is the small population spread over a vast distance that makes ongoing collaboration and communications difficult. When looking at advocacy, we have many different organizations and individuals working on issues sometimes together, but very often in isolation not knowing or trusting what each other is doing. Even today with more communications options available, because of accessibility issues of some current technology and the lack of assistive technology training, many times we are not aware of what each other are doing.

Although this discussion was meant to cover all ages, economics and other demographics, no effort was put into ensuring that all were adequately represented. To recruit participants the communications avenues employed were through discussion mailing lists, Facebook Groups, Twitter feeds and newsletters known by the committee members and the organizations they interact with. In short, we relied on word of mouth to promote the Tele Town Hall meetings, and by copying representatives of the blindness, low vision and deafblind organizations on our radar it was hoped that news of this initiative would be circulated to their respective networks. It was noted that the first meeting had the largest number of participants, with numbers decreasing as we moved into the final two gatherings.

This report looks at the discussion that occurred during each of the town hall meetings and attempts to put forward some suggestions and challenges to individuals and organizations working in the sector and what that might look like. It should be noted that even though the role of service providers like CNIB was not the main goal of this discussion, it does factor into the ongoing relationships between people and organizations representing people who are blind, partially sighted and deafblind.

Premise:

It is understood that within the blind, low vision and deafblind community there exists a wide range of people whose experiences, thoughts and attitudes are affected by whether their vision loss is congenital/ Adventitious, their individual independent living goals/skills, interest levels in advocacy, participation goals, and community/family/social support systems. It stands to reason then that we will have received a wide range of opinions about whether or not existing Canadian organizations ought to be amalgamated, whether the vision loss community should collaborate more closely, where the shortcomings are, how they can be solved and who should do the solving. The clear message received asked that all those things that make us unique be considered by the organizations of and for the blind, partially sighted and deafblind as they develop services, programs and engage in advocacy. It is the Tele Town Hall Committee’s opinion that no real concise direction was determined through it all, and that the suggestions found herein were gleaned out of the comments submitted and thoughts expressed by participants.

Tele Town Hall Meeting #1

October 2016: Let’s Get It Out There

The first Tele Town Hall meeting asked four questions.

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?

Between the panelists and the participants on the phone many issues were noted as being important, namely that: means of engaging youth in advocacy and setting future directions remains important and as yet not well done; that technology has made a big difference in our lives, and that sorting out what the next burning issues are will be important to get done; a united voice is important so letting go of the past is crucial to ongoing collaboration and unity; it’s important to articulate on personal benefits derived from advocacy efforts as a means of increasing engagement; organizational independence is important, as is the demarcation of consumer verses service organizations for public understanding, and; it was noted that good collaboration is possible without the need for amalgamation. Much discussion ensued related to funding the work of advocacy through strong mandate articulation, the sale of current consumables/services to members as a means of benefiting them now for advocacy benefits down the road. It was noted that the two largest consumer groups in the USA work fairly well at the local level, and not always as well nationally. It was suggested that better networking and mentoring programs are needed as a means of increasing youth engagement, as is the study of other successful movements like the “Women’s movement”. It was suggested that research grants could be a means of funding advocacy efforts. In order to give the blind, partially sighted and deafblind population a stronger voice suggestions were made around the creation of service organizations made up of primarily consumers of the service.

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 the blind, partially sighted and deafblind working on projects and advocacy to help strengthen community activities provincially and locally?

Between the panelists and participants the important ideas seemed to be that: funders appreciate strategic partnerships; that collaboration can happen without the need for amalgamation; that organizations need to strengthen their coalition building processes so that work can carry on despite personnel changes; that staff/volunteer time be allocated to developing joint position papers on issues related to vision impairment and rehabilitation, and; that all current organizations are meeting different needs for their constituents, a goal that any one organization would struggle to fulfill. Participants agreed that the specializing of some organizations is helpful to the overall community provided collaboration works well, like having braille, dog guide and other specific organizations. Respect for each other and the various skills we bring to the table individually and organizationally is important to maintain. Some expressed distaste for conflict between organizations, especially between service and consumer organizations. These distinctions can end up being clouded today when service organizations conduct work traditionally reserved for consumers, and when consumer organizations begin to deliver services to their members and other blindness, low vision and deafblind service consumers. Some expressed that service organizations have no business doing advocacy, and would have no place being a part of any kind of coalition or network of consumer groups. The issue of Canada’s dual language was raised as a high cost item for all organizations. National organizations should work solely on national initiatives, and local organizations should focus on local issues. Either way, information about who does what for whom is an important communications strategy for all involved to consider for the benefit of members, consumers and the general public.

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?

Between the panelists and participants a range of opinions were expressed that included: coalitions can include cross disabilities, which can be a powerful statement to the general public; ground rules need to be negotiated early on how coalitions will be staff/funding resourced and populated; service providers can be invited under the understanding that consumers will speak on behalf of the members; formal working relationships and agreement to participate in a coalition on a specific issue works best to ensuring continued success even as representatives and personalities change; opportunities exist for coalitions to work on employment and other issues, and strategies to work toward them ought to be articulated and goals set for such coalitions to move forward; the DASM report (Developing Alternative Service Models) by BOOST written in the 1970’s is still a good model for consumer groups to work on in developing their strategies for future service delivery goals; conflicts should be worked out behind closed doors with unified fronts being exhibited in public, and; some believe that only organizations “of the blind, partially sighted and deafblind” should make up advocacy coalitions, and others indicated that issue by issue decisions can be made on such strategies, and that limiting membership in this way can leave a coalition without adequate resources to get the job done if some organizations are left out.

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

Between the panelists and participants it was noted that: when viewing advocacy on an issue by issue basis there is little in the way of fragmentation; the blind, partially sighted and deafblind community is broad raged in terms of degree of remaining vision, which leads to different accommodation needs that can often be viewed as fragmentation; where ever disagreement exists between individuals and/or organizations we might be better served by viewing that as a starting place to build consensus rather than separation; we can better utilize communications technology to bridge the geographic divides as we work toward finding common ground upon which to agree; blind, low vision and deafblind pride is something toward which we might try to move and to develop consensus, recognizing that those who identify as having low vision tend to resist the word blind; we might need a “blind revolution” in Canada, and that the National Accessibility Act is now before Parliament it presents a good opportunity for organizations to coalesce; the Consumer Access Group (CAG) seems to have failed to mount a sustained coalition, which appears to be an important thing to do according to some participant’s sentiments; some people believe that CNIB is one of the shackles holding back blind, partially sighted and deafblind consumers, and that Federal Government funds given to CNIB would be better spent on advocacy with the consumer groups; fragmentation, if it exists can be mitigated by using an inclusive cross-disability approach and networking with a variety of experts and those with the lived experience of vision loss; in Quebec there seems to be less fragmentation in the blind, partially sighted and deafblind consumer sector which is thought by some to be as a result of the Provincial Government being the rehab service provider, and that they don’t come to the table purporting to speak on behalf of their blind, partially sighted and deafblind citizens; egoism, lack of respect and unprofessional behaviour among some advocates reduces the whole community and ought not be tolerated; within the blind, partially sighted and deafblind community we must learn to be tolerant of the ranges of skills, vision acuity and levels of adjustment we’re all experiencing, and in order to be inclusive within our own community we should establish advocacy train the trainer sessions and adjustment to blindness, vision loss and deafblindness peer mentoring gatherings with a view to coaching consumers to become better service consumers; coalitions can be coalitions of three, which can then be built into larger forces for good and positive movement; some fragmentation exists due to services available for children and seniors, with a perceived gap for the working age group;

Tele Town Hall Meeting #2

March 4, 2017: Let’s Get It Out There

The second Tele Town Hall meeting asked four questions.

Question 1: How should service and advocacy organizations be transparent and accountable to the community?

Between the panelists and participants it was thought that: more open decision making and communications processes between organizations and with members would move us toward more accountability and transparency; there’s a perception that some organizations work at cross purposes, which might be mitigated through a conscious effort to build trust; that accountability means someone, organization or individual, should take the lead role in setting goals through consensus building; some existing organizational structures may be transformed into coalition style advocacy efforts, and some may need to be dissolved; some believe that CNIB isn’t serving the blind, partially sighted and deafblind in ways that is perceived by the general public, funders and government decision makers; there is a lack of separation between what the consumer movement and the CNIB do on behalf of the blind, partially sighted and deafblind in Canada in terms of advocacy; it was suggested that CNIB be broken up into provincial self-governing blindness , low vision and deafblindness rehab organizations, then establish Boards of Directors consisting of consumer group members elected by their members leading to accountable, effective, progressive service delivery; consumer organizations should meet annually to share advocacy goals and determine which organization will work on which priority; with increased reporting to the consumer movement on government grants and funding as to services delivered and outcomes achieved, more and better accountability to the end user can be achieved; a “Watch-Dog” organization should be established that would deliver an annual report card on service and consumer organizations based on three criteria, Tell us what you’re going to do, Tell us about it as you do it and Tell us how you did at the end, and; CNIB appears to be more concerned with its continued relevance, funding, and identity rather than the needs of blind, partially sighted and deafblind consumers, and that consumer groups taking matters into their own hands is seen as a threat.

Question 2: How do we engage individuals and the blindness community concerning our needs and rights in the broader Canadian society?

Between the panelists and participants it was thought that: individuals who want a better way must take responsibility to work toward it; consumer organizations only work if there’s a community that comprises it; cross organizational collaboration is essential; small incremental gains should be celebrated if it moves toward the greater good; for increased engagement and participation all forms of communications should be used, telephone, face-to-face and written participation; to engage youth in advocacy different forms of communication need to be employed, that there be a set of concrete actions with immediate results for them to stay engaged, those who didn’t attend “schools for the blind” may not be well connected in the blind, partially sighted or deafblind communities, and may not want to be outside of sporting and similar activities; organizations who are successful in engaging youth ought to be sought out for advice; some of today’s youth have multiple disabilities which makes advanced advocacy more difficult; we need to engage them In activities that will build their skills sets and resumes; older citizens who lose sight are also without a blind community to identify with, and they too must be engaged in ways that bring them into the fold rather than alienate them; engaging with cross disability organizations is a great way to take our message to the masses; we need a more unified message from the consumer movement to take to CNIB so as to articulate the blind, partially sighted and deafblind community’s real needs; one size does not fit all, and that organizations have to remain conscious of varying needs, skills and abilities of individuals, and to articulate that clearly to the general public, funders and government decision makers;

Question 3: What specific actions can individuals and organizations take to promote transparency, integrity, accountability, and respect?

Between panelists and participants it was thought that: we all must be clear when doing self-advocacy that it is our opinion and not necessarily the needs of the community; As both organizations and individuals, we need to act and be transparent with what we do for the different segments of our community, deafblind, multi-disabled and/or LGBTQ; we must refrain from judging others and to offer understanding and support for our differences, preferences and independence goals; assumptions can lead to fragmentation, conflict and general misunderstanding, as might be some of the comments shared regarding youth through these meetings with no known youth attending to speak on their own behalf; silos are believed to exist in the community, which leads to closed communications, lack of trust between organizations and to confusing messaging broadcast to the general public; more research is needed to establish the real needs of blind, partially sighted and deafblind consumers so that an information hub can be developed; we should lead by example to promote trust, integrity and respect by demonstrating the same; we should “Be as wise as serpents, but as gentle as doves”: On a personal level, be respectful of others – but analyse the situation and have an understanding of the landscape as not everything is as it appears to be, particularly where individual and organizational power imbalances exist; the blind, partially sighted and deafblind community might do well to select a national awareness day aimed at promoting the abilities and needs of those living with blindness, vision loss and deafblindness; we should be respectful of others without playing into stereotypes of those “nice polite blind people”, other advocacy endeavours don’t always play by nice rules; the more experienced advocates might want to be less intimidating when working with the less experienced among us, and to seek such opportunities to coach and mentor, and; we should individually and organizationally express appreciation when decisions are made and action taken that supports growth, forward movement and the achievement of our goals for independence, inclusion and autonomy.

Question 4: What should be included in rules of engagement that would govern ongoing collaboration in the blindness community?

Between the panelists and participants it was thought that: little steps build trust for bigger steps, and that we should individually and organizationally focus on the message trying to look past “delivery style” and personal flair – all collaboration efforts should begin with a reminder of the importance of focusing on the content and not the messenger or delivery; we should want to, and demand to be part of the decision making process where consumable services are debated and established; when we recruit for work on an advocacy initiative we must ensure that we’ve brought to play all the experts and relevant information with which to make the best decisions and action plans; the establishment of best practices communications is a great way to share results, policies and strategies; rules for engagement with service providers is different than within the consumer movement; the consumer movement needs to support each other with letters of support when goals are achieved and the community’s agenda is advanced by any organization, and; coalition efforts ought to be established on a case by case basis rather than expecting them to survive across several differing initiatives.

Tele Town Hall Meeting #3

October 14, 2017: Advocacy without Borders

The third Tele Town Hall meeting asked presenters to tell us about the consumer and rehabilitation services systems in their countries.

Martine Abel-Williamson talked about the importance of differentiating our access needs from the needs of people with physical disabilities. NZ has one service provider and people are served in their homes primarily. NZ got its first blindness org in 1945 about when the CCB was started in Canada, and shortly after the NFB was started in the USA. It’s when blind people started to want autonomy and independence. Martine talked about the need for local and international collaboration as well, and the importance of having a good peer mentoring strategy and a legal aid program to assist persons with disabilities when their rights are violated or ignored.

Fran Cutler talked about what’s available in Australia, starting out with the need for a really good website targeted to each region of the country as the basis for good advocacy, information sharing and dissemination. The use of all the social media channels today has also become most important for keeping people informed and moving them to action when needed. She talked about the post cards used to alert people to hazards left on sidewalks that have the organization’s name and contact info on it. Most rehab services are office based in Australia as 2/3 of the population lives in 5 major Cities. Consumers in Australia are often asked to consult on matters of public access, and because voting is compulsory they are working hard at ensuring an inclusive and cost effective voting system. Guide Dogs Australia uses a billboard showing 30 people using white canes with one dog guide user, with the slogan that says, we train 30 blind people to move around independently with a cane for every Guide Dog user. Theirs is a home based rehab service model. Fran also indicated that the Australian organizations she spoke of seem to have carved out their own specialties, with one focussing mostly on advocacy, two on rehab services and another on public awareness and education. She didn’t say a lot about collaboration, animosity or political disagreements.

The need to consider services and advocacy from the indigenous person’s perspective was raised, where some collaboration work is being done internationally, in New Zealand, but not in Australia or Canada. Both speakers indicated that some advocacy has worked in educating decision makers and that much more needs to be done in order to achieve some degree of consistency. Technology support is another area where consistency isn’t always apparent. When government seeks advice on issues of blindness it appears that the higher profile organizations are called upon. New Zealand appears to have something similar to Canada’s Consumer Access Group that functions reasonably well. In terms of learning from each other what works in the advocacy arena, both presenters suggested that we don’t give up trying to find reasons to work together to advance our agenda.

Tele Town Hall Meeting #4

November 18, 2017: Advocacy without Borders. The forth Tele Town Hall meeting asked presenters to tell us about the consumer and rehabilitation services systems in their countries.

Mitch Pomarance gave us an overview of the American system of Federal and State funding of rehab services, which in California used to include everyone who lost sight, and more recently has been curtailed to focus on the working age population. Due to funding pressures, there appears to be some friction in the USA between the Independent Living movement and the blindness specific service and advocacy areas regarding who’s best equipped to deliver good independence skills to the blind population. Mitch talked about a time about 20 years ago when the two large consumer organizations in California worked together to advocate for a separate rehab organization for the blind, and that even though they didn’t get the organization, they did get a separate division within the State Rehabilitation Agency for persons with disabilities. California has established a 13-member advisory body that meets quarterly to advise the Rehab Agency on matters of importance to the blind community which is made up of people from the two consumer organizations, service providers, consumers and others. Mitch indicated that the collaborative framework has worked well and is worth spending energy on.

John Panarese talked about how different rehab outcomes exist in the 50 States of the Union. It seems that despite having two large and powerful consumer advocacy organizations in the USA they still end up with differences in how rehab services are delivered from State to State. John has noticed too that despite the two large consumer organizations there are a lot of individuals who don’t know how to advocate for themselves. It was also stated that consumers need to learn how to articulate their needs, strategize on how to best achieve them and insist that the rehab organization provide that which is needed and not that which is convenient to the service provider. John emphasized the need/desire for one over-arching consumer organization that could represent blind persons so that consistency might be achieved, and politics reduced. He expressed the importance of educating the consumer to their rights, responsibilities and the need for them to take charge of their lives and the path of travel.

Questions around the working relationship between the two consumer groups indicated that although it works well sometimes, trust and power struggles usually cause collaborations to falter. Clarification was given to the role of the ADA in the USA. It only covers matters of access and accommodation, and doesn’t touch areas related to rehabilitation. As in Canada, the access needs of physically disabled citizens enjoys a higher priority than do blindness related issues. The consumer groups in the USA are structured with Divisions dealing with separate issues like, deafblind, employment, dog guides, LGBTQ, lawyers, teachers, children etc. On the question of consumer groups working together Mitch indicated that the NFB and the ACB will amalgamate shortly after the Democratic and Republican Parties join forces. Everybody has their own philosophy, goals and desires and the best we can do is to learn how to work together with respect and understanding. The question of attitudes about blindness among the general public was discussed, and despite much effort being spent on this issue by both consumer organizations in the USA, there is still a long way to go. Blindness is still one of the top three feared disabilities and little has changed in that regard over the years.

Tele Town Hall Meeting #5

March 10, 2018: Have Your Final Say

The fifth Tele Town Hall meeting asked five questions.

How well do current blindness/low vision rehabilitation services organizations in Canada serve your needs? Or do they not serve your needs as the case may be? (I.E. Are your personally happy with existing Canadian blindness rehabilitation services?)

Participants indicated that: low vision issues are not well understood by the general public and that service organizations could do a better job of disseminating information about the difference between blind and low vision; The geography of Canada is such that in rural areas little in the way of rehab service is available or delivered making independence more difficult to achieve; Given the constant change to the assistive technology in our lives it has created a need for more and ongoing training, and there is not enough mobility training available to blind, partially sighted and deafblind Canadians; The monopoly in the Canadian Rehabilitation Services sector needs to change so that competition can start to drive innovation, and that entrepreneurial opportunities for blind, partially sighted and deafblind citizens ought to be made available in this regard through open tendering of those available funding dollars; In Quebec where the province funds rehabilitation there appears to be a hierarchy of service availability with blindness services like Orientation and Mobility falling behind other services; The pan-disability employment services currently operating in BC means that staff there no little about blindness, low vision or deafblindness, and the CNIB and our consumer organizations have not done well to educate them, leading to a less than helpful level of service to the end consumer; The ongoing upgrading needed to our assistive technology and the training required in order to stay abreast of it is lacking, as is the funding necessary to keep up with these constant changes; With CNIB moving to a provincially funded Rehabilitation Organization model perhaps increased opportunities will be generated for entrepreneurs to enter the sector, and; In Nova Scotia blindness rehabilitation has been funded by the province for about 2 years, and so far no increase or improvement has been noticed.

How well do blindness/low vision advocacy support organizations in Canada serve your needs? How are they not serving your needs as the case may be? (I.E Are you personally happy with the existing consumer advocacy and support movements in Canada)?

Participants indicated that: we need unity with autonomy, unity with diversity rather than amalgamation of the consumer movement; we don’t always work well together in some pockets of the country, and in others it works a little better; the consumer movement in Quebec isn’t as strong because all rehabilitation services are provincially funded, and that as similar strategies are employed in other parts of Canada similar things might start to happen, and hopefully we can learn from each other; the CAG initiative has worked to some degree, however because it is financially dependent on CNIB there has been some reluctance to criticize them for fear of losing that funding and administrative support; among the post-secondary student population there is little connection to the existing consumer organizations which is leaving them disconnected and unaffiliated; the older adult who lost sight after a lifetime of vision are not well represented in the consumer movement, as well as those who live with low vision, and that our consumer organizations need to broaden their programs and recruiting efforts to engage those two groups more effectively; consumers from foreign backgrounds are not well assimilated into the blindness, low vision and deafblindness consumer movements or in society generally, so more needs to be done to ensure that all are included; the changes to the role of the service provider whereby they are taking on a larger advocacy role is causing a scary future for the consumer movement in Canada, so where we can we must find ways to unify or run the risk of losing our identity; there is a lack of accountability and transparency at the national level in the consumer organizations that isn’t so prevalent provincially and locally; too many consumer organizations have not done and are not doing enough succession planning to replace the few people who seem to do most of the advocacy work, which has led to the closure of one BC organization so far, and; the CNIB is the “go-to” organization for most governments, the media and the general public like it or not, so consumer organizations are wise to work with them if we’re to succeed.

If not, what will make them more responsive to the needs of blind, low vision, and deafblind Canadians and make agencies flexible enough to move the with the merging societal demand? If we don’t think that rehabilitation and advocacy organizations are filling our needs, what sorts of things will make it better? What sorts of things will make them more ready to shift with the times?

Participants indicated that: in the consumer movement we are the blind speaking for ourselves and not like the CNIB which speaks on our behalf, and if some of their clients want to be involved in advocacy they should join one of the groups and encourage the CNIB to be a better rehabilitation organization; there is a need for more mentorship programs for students coming out of secondary and post-secondary schools and wanting to join or re-join the work force; when working toward more and better mentorship programs we need more consideration given to the diversity within our community related to age, degree of vision loss, education, skills, culture, language and independence goals; our consumer organizations ought to appoint annually a consumer advocacy coordinator to whom the members can upload issues, and from whom they may determine what successes have been achieved, and that this person from each organization meet as a group periodically to establish priorities for the group to work on; the large dog guide schools often provide advocacy support on issues, and so to should the CNIB if they have the funds to do so, and the consumer organizations should be able and willing to work with them to advance the cause; we need more work done by organizations like the Consumer Access Group, and we need to encourage and educate each other on strategies of individual advocacy so that we can do more for ourselves, and by extension more for the entire community, and; we need to work out who has the skills, knowledge and ability to move issues forward, and work together to support each other toward resolution for the benefit of the community.

What strategies are required if we are to strengthen the voice of blind Canadians with government, communities, employers, (i.e. do blind Canadians need one single strong voice in order to advance our needs?)

Participants indicated that: although it might be difficult to bring the consumer organizations together to speak from one voice, we need to find some avenues where that can happen on an issue by issue basis, like public and government education around the abilities of blind, partially sighted and deafblind people and their needs in terms of rehabilitation if we’re to improve employment and societal inclusion deficits; we need to have the resources, time and energy in order to carry the torch of advocacy, and where that is found we need to gather behind it and work at moving the community forward, and that’s how the CNIB and CCD have gotten to “top-of-mind” today; we need a diverse, multi-skilled national consumer advocacy group that will focus on blindness, low vision and deafblindness issues, as well as age related and cultural issues; we need to recruit more worker bees to help carry the load; we need to work in the cross disability arena as a means of getting our priorities in front of a larger segment of the general public and decision makers; those of us with the lived experience of blindness, low vision or deafblindness are best situated to speak on our behalf rather than having someone else speak for us, and; technology is so important today in leveling the playing field, and there’s not enough understanding about the difference it can make, nor is there enough training in its use.

What strategies can blind Canadians employ to amplify their voices in order to be better heard within Canadian organizations of an organizations for the blind? (I.E. do blind Canadians want to be more involved in driving the organizations that provide rehabilitation services in Canada?)

Participants indicated that: the CNIB National and Division Boards are mostly made up of sighted business people for purposes of fundraising and that staff make all the service, budget and strategic decisions, and that’s very dysfunctional. Their boards need to be reduced to about 12 members and that all seats be taken up by blind, partially sighted or deafblind Canadians; we must speak out when we see organizations intensifying the fear of blindness through their fundraising and other messaging; we need to be seen, we need to be persistent and we need to get and stay involved in order to move our agenda forward, let’s be the squeaky wheel; in order to acquire the technology and training that will allow us to participate in Canadian society we need funding, and that funding will only happen when the decision makers understand how important basic participation is to the eventual success of each of us; in order to seek the support of the public in our organizations we need to put forward a positive reflection of blindness, low vision and deafblindness, not a pitiful one; in acknowledging the hard work and dedication of those who have done the work to date, and in acknowledging that we who have the lived experience are key to telling the story and raising expectations, we must keep in mind the importance of bringing with us those allies who can help to elevate our issues and support our efforts; technology has connected us, and it disconnects us, it’s a friend and a foe due to its constant changing nature, it helps bring young people together and it keeps seniors from fully participating and it’s not going to go away so let’s find out how to make it work for us; fundraising works when it pulls at heart strings rather than at success stories so we’ll likely continue to see that style of letter coming from the CNIB, and we have to remember that many who are starting on their vision loss journey can identify with the sentiments expressed in heart-string fundraising, and; if we’re to engage young blind, partially sighted and deafblind Canadians we will want to ensure we’re communicating through all forms of social media.

Conclusions:

The Tele Town Hall Committee through a series of conference call meetings since the first such gathering in October 2016 has attempted to foster a system based on both individual and organizational mutual respect, and the goal to seek opportunities to foster the dream of achieving excellence within the consumer and vision rehabilitation fields in Canada. The motto, “Nothing about us without us” rang true and strong throughout the initial three open discussion gatherings, and from the presenters recruited to show us how things are done in Australia/New Zealand and in the USA during the “Advocacy Without Borders” segment of the Tele Town Hall meetings. These premises will be woven throughout the comments that conclude this final report.

Rehabilitation Services:

CNIB is often believed to be one of the barriers keeping blind, partially sighted and deafblind Canadians from achieving forward movement in terms of inclusion, Human Rights and true independence, and if those barriers are to be clearly articulated and worked on the consumer movement must come together to set goals, strategies’ and timelines aimed at affecting some of the changes we might wish to see.

Decisions based on science, not myth:

Participants were unified in the belief that we must ensure the best information is gathered/researched and subject matter experts recruited regarding advocacy issues being worked on, and for decisions being made that concern the blind and low vision community. No one thought it a good idea to operate on assumptions, stories or long held myths and beliefs if we’re to improve consumerism and/or the blindness, vision loss or deafblindness rehabilitation system in Canada.

Hear the message, not the messenger:

It was also noted on several occasions that when debating/discussing issues it is the desire of participants that we will individually and organizationally stay focussed on the message and not the messenger when offering our input, criticism and suggestions, and that it is equally important to hear only the message when receiving input from others. It is our responsibility to deliver respectful messaging, and to receive it in ways that foster cooperation, mutual understanding and respect. To agree is not always necessary or required for the community’s agenda to be moved to a better place.

Sharing information:

Several participants during the different segments of the series asked that we continue seeking new ways to set-up systems for the ongoing sharing of individual and organizational points of view, which already exists by email and periodic conference calls. To engage youth the consumer organizations ought to study the best ways to achieve participation, and to start by gaging the level of interest and the types of issues most important to that community

Engaging youth:

Engaging youth in the consumer advocacy movement was discussed with only a very small number of them participating in the Tele Town Hall meetings, so anything coming out of these meetings is conjecture and not based on their meaningful input. A study needs to be undertaken to determine how they might be invited to participate in continuing to build toward our collective future.

Engaging seniors:

Older citizens who lose sight are often without a blind, partially sighted or deafblind community to identify with in the same way younger people are if they’ve attended a “school for the blind”, and they too must be engaged by the consumer sector in ways that bring them into the fold and utilizes their experience and knowledge rather than alienate them.

Leadership growth and technology:

Succession planning is a major issue within the consumer organizations of people who are blind, partially sighted and deafblind. As we become more technically dominated, it is even more important to identify potential upcoming leaders and show them the value of collective action within one of the consumer organizations. Today, many young people see social media as the way to invoke social change. We need to work with them to show them that social media is only one tool in the toolbox that they can use to make change happen

Unity where we can:

One thing that was learned through this process is that a lack of unity within the population of people who are blind, partially sighted and/or deaf blind is a common issue in many different countries. Because of our different life experiences and the fact that blindness itself can’t be a unifying factor as with other societal issues, we need to look at where we can be successful as a larger group and work towards a common front on those specific issues so government and other organizations will listen to us as consumers instead of utilizing the conquer and divide strategy that has been used all too often in the past. For unity to work, each of us must be respectful and non-judgmental about the differing skill levels and needs of others, whether it be due to age, degree of vision loss, type of vision loss, time of life when vision loss occurred, culture, and independence goals desired.

Public/Government education:

Participants expressed multiple times how important it is to educate funders, the general public, government decision makers and the blind, partially sighted and deafblind community about the difference between a consumer organization and a rehabilitation service provider.

Celebrate victories:

Too often we hear sentiments that we’ve failed if we’ve only achieved part of our advocacy goal, and that’s hurting the community. Participants expressed a desire to celebrate some small victories along the way as a means of keeping the energy levels up, and from which to springboard to the next success story.

Strategic partnerships:

In this day and age, governments, funders and most of the blind, partially sighted and deafblind community appreciate strategic partnerships on important issues, and that came through in comments delivered by Tele Town Hall participants. As well, it was reflected in some of the comments that more cross disability collaboration is needed in order to have our needs heard and recognized more broadly by governments, funders and the general public.

Blindness awareness:

September is often used as an opportunity to promote blindness, vision loss and deafblindness prevention work, CNIB uses May for Vision Awareness Month and the CCB uses the first week in February to promote White Cane Week. It was suggested that the community of blind, partially sighted and deafblind consumers and consumer groups focus on one annual day/weekend/week to promote awareness of our abilities and needs.

Consensus building:

The message that participants desire to see multiple Canadian consumer organizations joining together to establish an arms-length advocacy coalition aimed at pursuing issues of common concern/importance was heard often and loudly. We also often heard the belief that building consensus is a key to success when organizations undertake to work on an issue together.

Coalition strategies:

Currently, The Consumer Access Group (CAG), is the only active national forum where various blindness, low vision and deafblindness organizations gather on a regular bases to share information and potentially develop strategies for working on issues of common concern. The CAG has done some work at developing position papers on some issues of general concern (See above link). However, there has not been the efforts necessary to ensure there is broad knowledge of this work even within the population of people who are blind, partially sighted or Deafblind.

Success stories exist:

In order for CAG to be truly effective, a method of broader input into the activities of the coalition could be developed that might look similar to how the Hands Off Our Harnesses Coalition of Guide and Service Dogs is operating. IN this case, there is a social media presence, a discussion list for interested parties and a few people carrying out the detailed work of the coalition. CAG may want to focus on a couple of specific activities and work towards a broader decision making structure that is effective and inclusive and efficient.

Questions of the Blind, partially sighted and deafblind sector regarding Next Steps:

Given the above introduction, comments and conclusions your committee would like to offer a challenge to the leaders of all blindness, low vision and deafblind consumer organizations in Canada to come together to answer a few simple questions, and to begin the work of coalition and consensus building with the view to constructing a road to that better day we all seek.

Although the work of this Committee has concluded, it is our fervent dream that the current and future leaders in the Canadian consumer movement will take up the challenges issued in these pages, and that one day blind, partially sighted and deafblind Canadians will have a meaningful seat at the decision making tables related to our participation in community life, that all will offer us the respect we deserve for our abilities, dreams and goals, and that we will truly speak for ourselves to ears that know it is the only way forward.

The Tele Town Hall Committee challenges each and every blind, partially sighted and deafblind Canadian to share this report to the staff, volunteers and members of organizations who serve and support your needs, rights and responsibilities. Think about it. To gain an edge, the evil one needs only to get able men and women to see themselves as neutrals. Make sure that this will never be the case with you!” “The only thing necessary for the triumph of evil is for good men [and women] to do nothing.” –Edmund Burke.
The Tele Town Hall Committee challenges the blind, partially sighted and deafblind consumer sector to begin working toward the day when rehabilitation service providers are no longer at the Government table deciding our fate or speaking on our behalf. We must embrace the motto, “What’s about us is up to us”.
The Tele Town Hall Committee challenges all Canadian consumer organizations to continue similar consultation efforts that lead to the compilation of the information in this report as a means of further engaging the blind, partially sighted and deafblind community toward increased involvement in their own future. “Nothing about us without us”.
The Tele Town Hall Committee challenges the Board Chairs of every blindness, low vision and deafblind consumer organization in Canada to meet before the end of 2018 to begin the process of developing go-forward strategies to improve and strengthen the “voice of the blind” in Canada. “If we think we can or if we think we can’t, we’re right.” Henry Ford.

Respectfully submitted on August 17, 2018:

Donna Jodhan, Richard Marion and Albert Ruel, report authors on behalf of the entire Committee, the Let’s Get It Out There tele town hall team Richard Marion, Anthony Tibbs, Melanie Marsden, Albert Ruel, Paul Edwards, Robin East, Louise Gillis, Pat Seed, Jane Blaine, Kim Kilpatrick, and Donna Jodhan

Mission Statement

Appendix A

Tele Town Hall Organizing Committee

Revised Sat 9/9/2017 1:11 PM

Nothing worthwhile in the world happens that doesn’t begin with a dream.

It is the mission of this Town Hall organizing Committee to provide an opportunity for people who are Blind, Partially Sighted and Deaf Blind In Canada to explore, together, options and opportunities that will make life better for All Canadians.

We, the Town Hall Organizing Committee, are a group of individuals, with a variety of affiliations and interests, who are committed to forwarding the betterment of the lives of blind, partially sighted and Deaf Blind Canadians by providing town halls at which information can be shared.

As Facilitators of these Town Halls, we have chosen speakers from all over the world who, themselves, are Blind, Partially Sighted, or Deaf Blind. They will explain the agencies and services in their part of the world, and how those who are Blind, Partially Sighted, and Deaf Blind obtain and receive services within their region.

They will also provide information about any peer interaction and peer support Best practices that they have experienced.

Each Town Hall will include time for participants to ask questions of the speakers.

It is our hope that, after consumers have had a chance to attend and participate in these town halls, they will be in a position to take what has been learned to develop some consensus about the future direction of services and activities for those who are blind, Partially Sighted and Deaf Blind in Canada.

It is at that point, that we, who are Blind, Partially Sighted and Deaf Blind in Canada, can all meet, together, to provide recommendations and design a process to affect Positive change in the wider community.