ADVOCACY AND PERSONAL EMPOWERMENT

ADVOCACY AND PERSONAL EMPOWERMENT By: Chris and Marie Stark  

• Editor's Note: Chris and Marie Stark are long-time advocates for increased access, universal design and true inclusion for blind persons. They live in Ottawa.
• People who are blind, deaf-blind and partially sighted have been sucker punched for years by product and service providers, who say that universal design and retrofits are too costly to ensure usability for all.

  But advocacy provides a practical vehicle for change and empowerment, and it can have a direct positive impact on quality of life and personal well-being.   In 1996, we settled a human rights complaint with the Royal Bank of Canada on condition they develop and implement an accessible automated banking machine (ABM). The first accessible ABM was introduced in Ottawa in 1997.   Once the technology was proven, we believed access to most ABM’s in Canada would follow. Seven years later, however, less than one percent of ABM’s can be used independently by blind Canadians and none by  People who are deaf-blind.   We first received our bank, credit card and other statements in Braille, but we kept pushing and now we can get most of that information online or via email. The Royal Bank has made its websites and telephone banking service reasonably functional for people who are blind.   But exclusion is a chronic problem, and it is a part of Canadian corporate culture. Nowhere is this more evident than the  telecommunications sector.   In  the mid 90’s, we first became entangled with Bell Canada over a plan to charge people who are blind for directory assistance, even though they didn’t provide us with accessible phone books. Other decisions related to pay phone and yellow page accessibility, and the provision of phone bills we can read independently. A decade later, we are still struggling to gain equal and equitable service, like in the use of cell phones.   Television service providers apparently didn’t think they had to serve people who are blind either.   When we asked the weather network to make its visuals accessible, it offered a separate, inferior and not-real-time information  weather broadcast service designed especially for “the Blind”.   We asked that cable companies like Rogers make their channel line-ups, bills and terms and conditions of service available to us in formats we can read. They were ordered to do so.   Again, we expected that awareness of our needs would lead to inclusion. Imagine our consternation when digital television came along with on-screen programming menus that we cannot use!   On a more local level, the ability to vote privately and independently in municipal elections has long been a fundamental issue for persons who are blind. In the good old days, citizens who are blind were asked to bring someone to mark their ballots or election officials occasionally insisted on marking the ballots. On one memorable occasion, we were forced to go into the utility closet among the mops and brooms and verbalize our selection to an election official. We did this in order to cast as secret a ballot as possible given the inaccessibility of the voting process at the time, including the lack of ballots we could use independently.   More recently, we were offered a template with our ballot, along with a list of candidates in large print and braille. We placed our marked ballots in a privacy sleeve and inserted it into the machine ourselves. We felt confident that our votes were counted accurately. As the machine will indicate if a ballot is unmarked, destroy the ballot and direct the voter to cast another ballot, gone are the days of spoiled ballots, which was always a concern for voters who are blind.   Sidewalks, or lack thereof, are a never-ending community issue. We do not like walking along the curb  on the edge of streets. It is hazardous to move around cars that are parked in the road.   We have had many sidewalks built as retrofits.   The first was along a busy  street so that we could walk our six-year-old daughter to dance class in safety. At first we were told not to worry because drivers could see that we were blind and would react accordingly. We pointed out that drivers could not see a white cane against a snowbank in a blizzard. It was a lovely sidewalk that enable us to go to several stores as well, and others use it today with their children.   Access to information is perhaps the greatest barrier that we face as citizens who are blind in attempting to live independently.  The strongest case for readable material centres around the right to know what you are paying for, including hydro, water and property tax bills. Technology has made providing this information easier, and we now get some sent to us electronically and securely over the internet.   Obtaining shopping information   is a continuing challenge.  Some stores like the local market will email us their specials. After a prolonged and protracted struggle with Canadian Tire  involving a human rights  complaint, its web site and e-flyer were made usable. Zellers, M and M Meats and a few other chains have dabbled in making their sales flyers accessible to persons who are blind.   One of our information needs is for grocery store specials. For many years, again after a human rights complaint,  The IGA in our former community made its specials available to us and provided a store person to assist with shopping. When we moved, Loblaws became the largest nearby grocery store. We asked for its flyer, and after a letter to the president pointing out the irony in having a Loblaws  Charitable Foundation while refusing to provide sales information in a readable form to people who are blind, the flyer was provided for a time. More recently, however, the employee responsible for this work left, and we have been waiting for the service to resume. We will have to fight this battle a second time.   It is discouraging that new services start out as inaccessible and informed consumer choice is still not a practical reality for Canadians who are blind. Universal access is still dependent on individual initiative.   Here are a few do’s and don’t’s that we have found helpful:   Be specific in the demand, expressing clearly what you want and why.   Be explicit about why the existing arrangement is not appropriate. Often this relates to equal access.   Be careful not to let the service provider pass your request off to a charity.   Be  prepared  for the exclusion arguments like: number of users;  too costly; who do you represent?;  what do the experts in blindness think?; who else must we consult?; and    who else is doing it?.   Try to prevent the issue from taking on  a life of its own--requiring studies, standards  and other excuses—something that hinders the development of a solution now.   Try to avoid solutions that segregate or are  labelled “SPECIAL”—solutions just for you.   Try to work with the appropriate officials, but be clear that the price of cooperation  is progress—now.   Be prepared to go outside the system in order to remove resistance, like by involving the media, elected representatives or regulatory bodies.   Do not  apologize for your commitment, beliefs or feelings.   Decide how much effort the issue is worth in terms of  your valuable time and  stamina, and be prepared to walk away sometimes with just the satisfaction of trying.   To us, advocacy means personal choice and commitment. It is a life force for bettering our human condition and  a value to be cherished. Self advocacy is a lifelong occupation—from the cradle to the grave.