by Marion Gwizdala
From the Editor: Marion Gwizdala is president of the National Association of Guide Dog Users. He is eager for everyone in the blindness field to recognize guide dog users’ changing understanding of themselves and their relationship to the institutions that train them and their partners. This is what he says:
In his book, The Power of Positive Thinking, Norman Vincent Peale asserted, “The sort of image you hold of yourself is very important, for that image may come to fruition. The thought is the ancestor of the deed.” If we imagine ourselves with thoughts of success, Peale believed, the deeds of success would naturally follow. On the other hand, Peale contended, “If you see yourself as inferior in any way and you hold that image in your conscious mind, it will… sink into the unconscious, and you will be what you visualize.” In my life as a blind person, what Dr. Peale said is true for me. I viewed myself as those around me did: helpless, dependent, and needy. I was grateful for the training I received and felt a sense of indebtedness to the agencies that assisted me. I had received excellent training, but it had been accompanied by subtle condescension and quite a bit of intimidation. This sort of unbalanced relationship is fertile ground for custodial and paternalistic treatment—the belief that the agency is responsible for protective supervision and like a father dealing benevolently and often intrusively with his children.
As president of the National Association of Guide Dog Users, I am concerned about such dynamics in the guide dog movement. Some are subtle, such as the prevalence of statements asserting that the guide dog brings a blind person dignity or the description of the guide dog as a gift. Some are more conspicuous, such as Fidelco’s “sole and absolute discretion” over its consumers’ ownership of their dogs.
My description of a guide dog user as a consumer has been challenged by some of my colleagues because most people think of a consumer as someone who purchases goods or services. Although some guide dog training programs charge a fee for their services, this is seen as only a token gesture to fulfill a legal construct known as “consideration”; however, money is not the only thing of value that can be exchanged. In the field of economics a consumer is defined as a person or organization that uses a commodity or service. This definition makes no reference to purchase of a commodity or service, only its use.
In an effort to recognize the fundamental power of those they serve and to emphasize their commitment to dignified, equitable treatment, many organizations are beginning to refer to those who use their goods and services as consumers, regardless of whether or not money is exchanged. These organizations include public entities such as police, fire, public works, parks, and social services departments. In the blindness field state agencies for the blind and rehabilitation centers have also adopted this terminology. The concept of the blind person as a consumer rather than a client empowers blind people by giving us control over our lives.
In the guide dog movement blind people are still treated like clients in many ways rather than as consumers. For instance, every training program I have questioned has told me that their consumers’ files are confidential and that individuals are not allowed to view what is in them. Some training programs forbid the use of the white cane once training has begun, even when people are not working their guide dogs. Some programs require their consumers to submit annual health reports from a veterinarian. Most retain ownership of guide dogs for a period of time after the completion of training and reserve the right to repossess the dog arbitrarily without explanation and without due process. I believe that each of these policies reflects the intrinsic attitude that the blind are incapable of making such decisions on their own and therefore need the oversight of those who are so-called experts in the field. I also believe there is a direct relationship between custodial, paternalistic attitudes and the ownership policies of the training programs.
In an effort to empower guide-dog-training-program users and encourage all training programs to create sound, consistent policies that recognize blind people as responsible adults capable of making decisions in their own best interests and those of their dogs, the National Association of Guide Dog Users has developed the Guide Dog Consumers’ Bill of Rights, which outlines specific guidelines for the treatment of guide dog consumers from the application process and training phase through retirement. It includes such topics as informed consent, confidentiality, access to personal files, ownership, and due process. We hope that guide dog consumers will realize that they have a choice in the type of program in which they participate and make their choices based upon how well a particular program aligns with what is considered fair and equitable in other areas of consumerism. We also hope that training programs will take note of what consumers consider fair and equitable. We believe that this Bill of Rights will be the catalyst for those training programs with antiquated policies founded in custodial, paternalistic attitudes of the past to restructure their policies to reflect the current belief in the blind as consumers. Here is our Bill of Rights:
a. The guide dog training program shall seek input from the consumer concerning the type of dog requested throughout the matching process.
b. Consumers shall expect that every effort will be made to provide dogs in excellent health and with appropriate temperament. Prior to placement the training program shall fully disclose to the consumer in writing and in the accessible format of the consumer’s choice all known issues concerning the dog’s health, temperament, behavior, and training.
c. The consumer shall expect a high level of competence from the training staff to develop sound skills of working a guide dog.
d. The guide dog training program shall correspond with individual consumers in the accessible format of their choice, i. e., large print, Braille, audio recording, or electronic text.
e. Guide dog training programs shall maintain their Websites and online media, including newsletters, press releases, and other collateral materials, in a format accessible to the blind.
2. Equitable Treatment
a. The consumer’s freedom of independent travel with a white cane shall not be restricted by the training program, unless doing so would interfere with the training process or adversely affect other consumers.
b. Consumers shall be free to monitor and manage their personal health independently, including, but not limited to, blood pressure monitoring, blood glucose testing, insulin injections, pain-management regimens, and all other health maintenance routines. Assistance may be offered; however, the consumer has the right to refuse such assistance.
c. The consumer shall have the right to discontinue training at any time with the full cooperation of the training program.
d. Consumers shall be afforded opportunities to travel off campus independently accompanied by their guide dogs prior to completion of training, at the discretion of the training program.
e. With the permission of the puppy raiser, consumers shall be given the option of contacting their dog’s puppy raisers near or after the completion of training. Further contact, such as meetings, phone calls, etc., is at the sole discretion of the consumer and will not be required, expected, or discouraged by the training program.
3. Informed Choice/Due Process
a. All binding contracts, agreements, and other documents shall be available for review in the accessible format of the consumer’s choice before making a commitment for services.
b. Before consumers make a commitment to receive services, they shall be provided in the accessible format of their choice all policies, practices, and procedures governing their behavior while participating in services, e.g., engaging in professional endeavors; use of cell phones, computers, or other technology; and furloughs.
c. Consumers shall have the right to use the services of an advocate of their choice. The designation of a consumer advocate shall be made in writing to the guide dog training program.
d. Specific written due process procedures, including mediation options, shall be developed covering all decisions and actions of the training program that affect its relationships with consumers, individually or collectively. Due process may be initiated by a consumer or his or her designated advocate.
e. All decisions and actions of the training program, such as denial or discontinuation of services, removal of a dog, or repossession of a harness, shall be made in writing in the accessible format of the consumer’s choice with a detailed explanation of the decision made or the action taken.
f. The removal or repossession of a guide dog for reasons of safety shall include an assessment of the working team through direct personal observation by an individual competent to make such an assessment. The specific safety concerns that serve as grounds for the removal or repossession shall be provided in writing to the consumer in the accessible format of his or her choice prior to the removal or repossession, and/or to an advocate acting on behalf of the consumer.
a. All personal information about a consumer, whether oral or in writing, shall be kept confidential. This confidentiality policy extends to all staff and volunteers of the guide dog training program.
b. A consumer’s refusal to allow other training programs to share information during the application process shall not be used as the sole grounds for denial of services.
c. A consumer’s personal information and records shall not be shared with anyone without the express written permission of the consumer to authorize the training program to release information. Only the information that is authorized for release may be shared.
d. No personal information shall be shared with any other person or organization without the express written and signed consent of the consumer. In such cases only the information authorized for release may be shared.
e. Individual consumers shall have the right to access any and all of the information gathered or collected about them by the guide dog training program and contained in their files.
5. Ownership and Disposition
a. The consumer shall be given legal title, ownership, and possession of the dog upon completion of the training program. Such title, ownership, or possession shall not be revoked, suspended, or otherwise interfered with without due process and in accordance with other provisions of this document.
b. Follow-up services shall be optional. Invitations for follow-up services may be made when a representative will be in the area with the understanding that the consumer may decline the offer without consequences.
c. The retirement and disposition of the guide dog shall be at the discretion of the consumer. Training programs may offer advice and guidance but may not impose mandatory retirement, unless doing so is necessary to protect the dog from abuse, maltreatment, or neglect or for reasons of safety as provided for in this document.
6. Abuse, Maltreatment, or Neglect
a. Consumers shall have the right to know the identity of those who file allegations of abuse, maltreatment, or neglect and shall be given the opportunity to answer such allegations before the training program commences any action. Anonymous complaints shall not be accepted.
b. The removal or repossession of a guide dog based upon allegations of abuse, maltreatment, or neglect shall be done only after a thorough investigation by an objective third party of competent jurisdiction over the consumer and the dog. A detailed explanation of the decision to remove or repossess a guide dog shall be given to the consumer or a designated consumer advocate in writing, in the accessible format of the consumer’s choice.