As those senior moments become more frequent, quality of life becomes increasingly important. As we age with dignity, the desire to enjoy life becomes stronger. Retirement is imminent. Comfort, security and enjoyment are life forces growing in strength.
We have long wanted to do an article on personal advocacy. It provides a practical vehicle to empower the individual to carve out access n an inhospitable world.
Advocacy can have a practical and direct positive impact on quality of life and personal well-being. We share the following experiences in an effort to illustrate the power of advocacy.
As time dragged and expressions of boredom were uttered, a University reader once said that the older you get the faster time flies and the days will pass you buy. Since time has reached supersonic speed now for us, we have to pick our projects and efforts to create change. We are too old to change the world. We can, however, have a positive impact on our community. We are fortunate that today in Canada the action is at the grass roots. Downloading has meant that the buck stops with community government. This level of government has the most direct and immediate impact on daily life.
Lack of ability to vote in municipal elections independently was a fundamental issue In the good old days – citizens who are blind would be asked to bring someone to mark their ballots. Election officials would occasionally insist on marking the ballot for voters who are blind. Poling stations would be set up at locations without sidewalks to them from the nearest bus stop .
On one memorable occasion, we asked to be able to tell our choice in secret and we were closed in the utility closet among the mops and brooms so that we could preserve secrecy of our selection when we told the election official how we wanted our ballot marked.
In most recent municipal elections, we were offered several choices. A template was offered with our ballot. A list of candidates in large print and Braille was provided. When we marked our ballots, we placed it in a privacy sleeve and inserted it into the machine ourselves. It worked the first time and we felt confident that we marked the ballot as we wished to and our choice was counted. As an aside, the machine will indicate if a ballot is not marked, destroy the spoiled ballot and the voter is told to redo their voting. Gone are the days of spoiled ballots which was always a big concern for us voters who are blind.
Lack of sidewalks is a never-ending issue. We do not like walking along the curb on the edge of streets. We believe that all urban streets should have at least a sidewalk on one side of the street. Modern urban planners save money by eliminating sidewalks on collector residential streets. It only takes one vehicle to kill a person who is blind. Without sidewalks pedestrians who are blind are weaving in and out of the middle of the street as they pass by parked vehicles along the curb. It can be done, but in our view it is hazardous.
We have had many sidewalks built as retrofits. The first sidewalk we had built was along a busy street so that we could walk our six year old daughter to dance class with safety. At first, we were told not to worry about the lack of sidewalks as drivers could see and would react to our blindness. We used absurdity to shame officials into building it as we pointed out that drivers could not see a white cane against a white snow bank in a blizzard. It was a lovely sidewalk that enabled us to go to several stores too. Others now use it with their children today.
On another memorable occasion, we had a sidewalk built because the existing sidewalk ended at the base of a tree at a corner. A prominent citizen vehemently opposed our request. However, after a newspaper picture of city waist: building a sidewalks for animals to reach their favorite tree for relieving a compromise magically appeared and the sidewalk was built around the tree. All were happy and later on the City received an award for environmental sensitivity in urban development for this sidewalk which meandered around the prized tree. We even had a platform built after a train left us off in a snow drift a quarter of a mile from the nearest building with a baby in arms in sub zero weather.
There is a long list of poles, fire hydrants and litter boxes which we have had moved from the middle of the sidewalk to the side of the sidewalk to eliminate this artificially and unnecessarily created safety hazard.
As people who are blind, we even have had a road completed. When we moved to a new development, the promised bus service was not offered because an unrelated developer was not going to build his section of the road for a few years. Intervention by a caring city councilor on our behalf and a lone with interest from the City to the developer got the road completed and we now have bus service. For the record so do about a thousand other families and the express bus is packed most of the time .
Another urban challenge is crossing streets at light controlled intersections. Audible pedestrian signals are available that chirp when the walk hand is white and are effective. For years, there was resistance. We could not understand the logic that said that people who can see need lights, crosswalks and signage to help them cross an intersection but people who are blind should do it safely without any equivalent information. Installations were done on a case by case basis after a vigorous challenge involving traffic counts and consultations with not for profit charitable organizations like CNIB to validate the consumers request. It took years to get an intersection equipped with audible pedestrian signage. We banded together with other dissatisfied consumers and created a working group. Council accepted our recommendation that all new and retrofitted traffic control systems at intersections were to be equipped with audible pedestrian signals. So when an intersection was equipped with traffic lights in our new community all we had to do was push the walk light button and the miracle of sound came. Gone were the years of pleading, arguing and time consuming meetings where the person who is blind needing the help is the only one not paid to be there and prolong the process. Eventually the problem will be eliminated, as all the traffic lights in the City are replaced. We will then have a truly universal design solution for all.
Access to information is the greatest barrier which we have to cope with as citizens who are blind attempting to live independently in the community. The strongest case for readable material centers around the right to know what you are paying for including telephone bills, hydro bills, water bills and property taxes. Technology has made providing this information easier, as we now get all electronically sent to us securely over the internet. Gas, cable bills and other costs like life insurance are provided when we want them. Since the costs are constant and not metered we find annual statements work well and help to mark the passage of time year after year.
Obtaining shopping information is a continuing challenge. Some stores like the local market will e mail us their specials. After a prolonged and protracted struggle with Canadian Tire involving a human rights complaint their web site and e-flyer were made usable. Unfortunately, this commitment to access by Canadian Tire has gradually eroded overtime. Zellers, M and M Meats and a few other chains have dabbled in making their sales flyers accessible to persons who are blind using adaptive technology. Our greatest need 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 us with shopping. When we moved, we found Loblaws to be the large grocery store near us. We asked for their flyer, and after a letter to their president pointing out the dichotomy between having a Loblaws Charitable Foundation and refusing to provide sales information in a readable form to people who are blind, the flyer was provided for a time. Then the person doing the work left the company and we have been patiently waiting for nearly a year for them to start again. Regrettably we have had to fight that battle for the second time. Now Loblaw’s has set up an accessible flyer service on their web site. While others, once again, took credit for our accomplishment to further their charitable ambitions, we, never the less, reap the benefit. What is difficult to understand is why other grocery chains like Sobies have not done the same. Obviously a complaint should bring about resolution of systemic problems when resolved.
The bottom line is financial records. We first received bank statements, credit card statements and the like in Braille. We kept pushing and now we can get most of that information on line as the Royal Bank has made its web sites reasonably functional for people who are blind. The telephone banking service also is very functional. Now we can track transactions in real time. We still receive our VISA statements by e mail too because it is the only way to track the actual amount billed on the print statement The monthly statement is the demand for payment and it is necessary to know this figure to manage interest charges. Canada Customs and Revenue Agency deserves a lot of credit for making it possible to file tax returns independently in the format most convenient to filers who are blind. The accessible forms are right on the web site side by side with the traditional forms.
Restaurant menus usable by diners without sight is also problematic. Most American chains with Canadian restaurants like Dennies will have Braille menus. Some have menus on their web sites which can be used to plan the eating experience before we go out to dine. In future, we will have talking menus but today we have to make do.
Self-advocacy is a never ending life long occupation. It is a cradle to grave activity. Some of our advocacy challenges today are asking for contemporary services in a mainstream solution like: screen phones, cell phones, on-screen programming, and web based information.
It is a source of discouragement that new services start out as inaccessible as small print to people who are blind. Informed Consumer choice is still not a practical reality for persons who are blind in Canada today. Universal access is still dependent on individual initiative. Here are a few doos and don’ts that we have found helpful:
Be specific in the demand
Be specific about what you want and why
Be explicit about why the existing arrangement is not appropriate equal access
Be careful not to let the service provider pass your request off to a charity
Be prepared for the exclusion rationales like: the number of users, the too costly argument, the who do you represent legitimization , what do the experts in blindness think, who else must we consult with 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 to avoid a solution now
Try to avoid solutions that segregate or are labeled SPECIAL just for you
Try to work with the responsible officials but be clear about the fact that the price of cooperation is progress now
Be prepared to go outside the structure to remove resistance by involving the media, the elected representatives or the regulatory bodies.
Do not apologize for your commitment, beliefs, feelings and emotions.
Decide how much effort the issue is worth in your valuable time and stamina and be prepared to walk away with the pride of trying at that point ,
If the issue did not mean something to you personally, then it was not worth spending time working on in the first place. To us, advocacy is a personal commitment. Advocacy is a life force for bettering our human condition. Self-advocacy is self-interest and a value to be cherished. Advocacy is true integration.