ADVOCATING FOR ACCESS: Securing Our Rights by Speaking Up

Note to Readers

 

This article was written at the end of the 20th century. More than a decade later it is interesting to see the results.. It is evident that the access rights obtained have a short shelf life. Our son is fighting the same access to information struggle we thought had been resolved 20 years ago. Access to financial information is still problematic for persons who are blind and past agreements have been forgotten or ignored. Much progress has been made with telecommunications and broadcasting services but each change seems to start without access built in resulting in the same barriers arising time after time with the introduction of each new service enhancement.

 

Chris Stark

 

ADVOCATING FOR ACCESS

Securing Our Rights by Speaking Up

 

BY MARIE LAPORTE-STARK

 

Humans are creatures of habit. It is difficult, and quite often frustrating, to bring about change. And when services are finally made more accessible to consumers, organizations often take the credit without mentioning how the service improvements came about.

 

As a so-called  advocate,  I can give you the other side of the story.

 

Although my goal is usually to improve my own quality of life, it is certainly rewarding to know that changes I helped bring about have greatly benefited a lot of other people.

 

When I was a child growing up with blindness in the late  50s and early  60s, my parents were given the choice of keeping me at home without an education, or sending me to a school in Montréal for children who were blind. Access to information was not a problem at l Institut Nazareth. Braille was used in all written communications, including text books and exams.

 

My eyes were quickly opened to communication barriers when I ventured towards personal independence as a young adult moving to university. Volunteer readers had to be used to record textbooks, and they were not always reliable. Notes had to be borrowed from other students, who were not always present in class. Essays had to be typed on a portable typewriter. Each teacher had to be approached for oral exams and a description of charts and other materials on blackboards. These were my first steps towards standing up for my rights, towards advocacy.

 

A few years later, raising children illustrated to me in an even more tangible way just how important it is to have information. Knowing what my children were doing by the sounds they made meant that I could effectively manage their care without even being in the same room. My daughter points out that it was disconcerting to hear me tell her not to play with something when I was not even in the room!

 

Within the home, access to information was rarely a problem. The children made lots of noise, the kettle sang when the water was hot, I labelled the microwave controls in Braille, the television dial clicked once when each channel was changed and the cat mewed when it wanted to be let out.

 

However, outside the house, access to information was problematic at best. Fortunately, while our children were young, my husband   who also has a vision disability   had enough sight to do the groceries, reading prices or checking bills with a magnifying glass. As his sight deteriorated, however, the information barriers gradually grew, challenging our independence, self-reliance and control over our personal lives.

 

Early on, the education system showed inflexibility and intolerance towards parents who were blind. Although students who were blind and integrated into the mainstream school system could have textbooks in Braille, I was told that I could not have Braille copies of the books used by my children. And yet, note after note came home urging parents to participate in their children’s education, to practise math and other drills with their children. (Of course, these notes were not in a form that I could read.)

 

Using the ingenuity and skills that had gotten me through university, I found ways around most of these barriers to participation in my children’s education. However, I slammed full-speed into a brick wall when it came to report cards. Even before they learned to read, our children were expected by school authorities to read their report cards to us, or else we were expected to get a volunteer to read the documents to us.

 

Our children were uncomfortable with this, even after they had learned to read. And using a volunteer from outside the family seemed to be an unwarranted intrusion into our family   an invasion of privacy.

 

Tackling the school board on this issue showed just how hard it is to change people’s attitudes. One teacher said:  Don’t worry about what is on the report card, as I will do what is best for your child.  A particularly insensitive principal stated publicly that his responsibility was services to children and not parents. If we could not read print report cards, that was not his problem, but our responsibility. (I guess we were to accommodate the school by finding ways to read print.)

 

This reverse accommodation  expectation propelled the issue to the superintendent of schools and the board of education, who replaced rejection with bureaucratic apathy. A board trustee even came to tell us that our demands for access to report cards were hurting our children’s education.

 

However, each time a report card arrived, the indignity spurred us on to redouble our efforts to obtain access in a dignified and equal manner like other parents. We filed a complaint with the Ontario Human Rights Commission. After several more years of debate, a new superintendent was appointed and soon we had a mutually acceptable agreement. An Alternative Format Policy was developed and adopted by the school board. By the time our son reached Grade Ten, we began to receive report cards we could read independently. This policy means that, today, other parents who are blind can obtain report cards and other materials in a form they can read independently   just as parents with sight have been doing for decades.

 

From this struggle, we learned that resolving such issues would be long, drawn out, emotionally draining and painful. There would be many disappointments and setbacks. However, we learned that many people with disabilities can benefit from the removal of barriers that force us into a role of dependence as a matter of administrative convenience, without regard for the human cost of such shortsightedness.

 

For years, our requests for information and accommodation were frequently met with: Well, can’t your children do that for you?  But we had long since decided that our children should not be required to assume any more obligations or responsibilities, because of our blindness, than other children. Perhaps the greatest example of this pass-the-buck attitude towards customer service occurred with a local grocery store.

 

For a number of years, we had been provided with help by store staff to select grocery products from the shelves for purchase. As a result of competition, the store began losing money and changed its approach to customer service. One day it was suggested that we should get our children to do the grocery shopping. When we protested, the owner dismissed our concerns.

 

Another complaint to the Ontario Human Rights Commission was filed, and dragged on for three years. Our point was that, if customers who are blind were provided with access to the same information provided to sighted customers   on signs, product labels, price stickers, and sales flyers   we would really enjoy doing our shopping without any assistance from the store.

 

As the issue moved towards formal review by the commission, the store was sold and the new owners were anxious to settle. Today, the store will provide assistance, in the form of a knowledgeable employee who walks through the store with one of us and selects products that we choose.

 

Also as a result of this settlement, the store’s weekly sales flyer is uploaded every week to a local computer bulletin board service (BBS). We often get the electronic version before the print flyer is delivered to our street. Now, any person who is blind and computer literate can access this sales flyer   and save money on specials just like the rest of the community.

As we battled the grocery shopping issue, we also began to have problems with money management, resulting from lack of access to bank statements and reports. The issue came to a head when the bank started rolling over term deposits at a low rate of interest because we had not reinvested the money. The bank said we had been sent print notices   which we could not read independently. We also discovered that home mortgages could now be paid on a bi-weekly basis, substantially reducing the interest paid. This had been promoted to customers in written form and many were benefiting long before we accidentally learned about it.

 

We discussed our concerns with bank officials. Over a period of several years, it became clear that the bank viewed our desire for access to information as a matter of charity. On several occasions they even went so far as to point out that it  gave money to an organization for the blind  and that was where we should be going for help with our financial management.

 

This time, we approached the Canadian Human Rights Commission for help, since banks are under the jurisdiction of the federal government. After yet another year of debate, the complaint was officially accepted by the commission in September, 1991. As discussions continued, the issue took on a life of its own and expanded to include electronic banking, banking machines and access to all bank publications.

In an effort to resolve the complaint, the Royal Bank of Canada introduced Braille statements for customers with personal chequing accounts. By that time, however, we would not settle for anything less than policy commitments and an acknowledgement of our right to equal access to bank-generated client information.

 

Eventually, in an effort to move this matter forward, we settled in 1996. However, the additional access to information and the promises of more to come, including access to automated banking machines (ABMs), are gratifying indeed. The industry may maintain that its efforts are not a result of complaints, but the fact remains that ABMs have been around now for more than a decade   and Braille has been around for more than a century   and yet access to information for customers who are blind is just now being seriously considered by the chartered banks.

 

The Royal Bank of Canada outlined a new policy to improve its service to people with visual disabilities, and agreed to report annually to the Canadian Human Rights Commission until adequate access to automated banking machines had been provided to customers who are blind. Less than a year later, the Royal Bank opened its first banking machine with audio output.

 

While the bank issue was crawling along, another information barrier was creeping into our home life. Bell Canada had asked the Canadian Radio-Television and Telecommunications Commission (CRTC) for permission to charge people who are blind for directory assistance. Yet the company had no intention of making telephone directories available in formats accessible to these customers. A small band of concerned consumers from across the country wrote letters, briefs, interventions and petitions to the CRTC, and ultimately the commission denied this component of the Bell Canada rate increase application.

 

However, once raised, the issue of access to information within the telecommunications network would not go away until resolved. Several years of correspondence between the CRTC, Bell Canada and ourselves eventually evolved into a formal application for access to information. While we did not achieve all that we had hoped, the ice has been broken. Under the Telecommunications Act, we are entitled to know what we are paying for and what services we can expect for our monthly subscriber’s payment.

 

A similar issue intruded into our dialogue with the CRTC when the cable industry introduced new channels and required all subscribers to accept and pay for these services (known as a  negative billing  process). Of the many documents the cable company was required by the CRTC to provide to customers, none was given to us in a format we could read. So, we approached the CRTC and requested that Rogers Cable Company be required to provide its subscribers who were blind with the same information that was required to be circulated to all subscribers.

 

Like other issues, the focus kept expanding and a resolution seemed to slip further away. In an effort to get the process moving, we filed a complaint against the CRTC with the Canadian Human Rights Commission, expecting that it would dismiss the complaint if any positive movement toward greater access occurred. I believe that this action encouraged the CRTC to take both the Bell Canada and Rogers Cable issues much more seriously and issue its directives. We and other customers who are blind can now receive our Bell Canada account statements and bills, and the channel line-up from Rogers Cable, in Braille.

 

However, significant issues remain to be resolved. The CRTC has not established a policy to ensure that those companies it regulates include customers who are blind equally in their service-delivery systems.

 

Visual-only displays continue to become more common in the telephone industry to identify incoming callers and provide a host of other information. The information on these screens will become more essential as telephone companies move into direct competition with cable and direct satellite to home services for customers. Telephone directories, including Yellow Pages listings, needed to make full use of telephone service still remain marginally available to customers who are blind.

 

Another outstanding issue is access to television program channel listings. Most cable services offer program listings to subscribers which scroll down half of a television screen, with the other half of the screen and all of the audio devoted to promotional advertisements. All subscribers contribute to the service, but only sighted subscribers can use it to determine at a glance what programs are being aired at a specific time. Sighted subscribers also have access to several newspaper or magazine sources for this program information. Even though persons who are blind do not have access to this information, there is strong resistance to making this service accessible to them.

 

The use of visual displays and music as a pause in the announcer’s commentary, or as a filler or break in programming, also creates a communication barrier. This is quite a serious issue since, for example, the weather channel gives all individual temperatures visually with music and no verbal announcements. What is more important on a weather information service than the temperature information? Yet the CRTC would not issue a policy addressing these concerns. This placed the access burden back on the shoulders of persons who are blind by deciding that this issue had to be addressed service-by-service, through individual complaints, or at the time of license renewal by intervention.

 

However, the CRTC did decide that cable companies had to make their community channel program information available in a usable format for persons who are blind, and that the community announcements must be made available in both audio and visual formats. The precedent has been set, but full access is a long way away.

 

The Royal Bank of Canada is putting into service a few audio banking machines, and the Canadian Standards Association has established a committee to develop a standard for barrier-free design for ABMs. The Canadian Cable Television Association is supposedly developing industry guidelines on access for persons with disabilities.

 

In the spring of this year, the CRTC issued Public Notice 1998-44 announcing a Canadian television policy review requesting public comments. I am pleased to see that, among the many questions posed, Question 58 relates to making television programming reasonably reflective of, and accessible to, persons with disabilities, and Question 66 relates to the probision of video descriptive services for people who are blind.

What will the future hold? Will direct home satellite service be fully accessible to a person who is blind? Will the information displays on smart cards be usable? Will electronic ticketing systems be accessible? Will home shopping by phone or cable be user-friendly for all shoppers? I believe that our greatest challenge in the future is to maintain access as new technologies and service models are introduced.

 

Choice is an integral part of consumerism. I dream that in the next century, when I choose to request a Braille menu, a Braille phone bill or a Braille manual for my bread maker, my request will be embraced warmly by the service provider. Customer service is also for consumers who are blind. Companies must come to accept that equal pay for services really warrants equal access to service information, in the most effective medium for the user.

 

Marie Laporte-Stark is an advocate and freelance writer living in Ottawa, Ontario.

 

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.