By Anisio Correia

“Nihil de nobis, sine nobis” is a Latin phrase which is typically translated into English as “nothing about us without us”. According to Wikipedia, this slogan used to communicate the idea that no policy should be decided by any representative without the full and direct participation of members of the group(s) affected by that policy. In its modern form, this often involves national, ethnic, disability-based, or other groups that are often marginalized from political, social, and economic opportunities. In 2004, the United Nations used the phrase as the theme of International Day of Persons with Disabilities, and it is also associated with the Convention on the Rights of Persons with Disabilities. Given that background, it was no surprise the Aging and Vision Loss National Coalition leadership agreed that a strong group of self-advocating older people was critical to effective advocacy for expanded and improved services for older people with visual impairments, Thus, the idea of developing a Consumer Advocacy Program was born.


The purpose of this new advocacy training program is to generate a new cadre of advocates among older adults with visual impairments. By providing specific skills, strategies and experiential opportunities through role playing, and current examples of advocacy initiatives, the project will prepare older adults to become advocates, capable of affecting change on an individual, group, and system levels.

The Aging and Vision Loss National Coalition (AVLNC) convened a group of known self-advocates, along with professionals from the fields of vision rehabilitation and curriculum development. This group has developed a training curriculum which initially will be implemented online but later be offered in person.

Initially, a great deal of time was devoted to the discussion of and need to clearly delineate the difference between the goals of a support group versus an advocacy training group. Committee members all agreed that, ideally, participants in a consumer advocacy training group should be those who have already adjusted to their disability and are comfortable with who they are; are aware of and have received blindness skills; are aware of and have perhaps participated in some kind of support group and/or counseling; have good self-esteem; and are overall self-confident.

Topic Areas

The focus of the sessions will focus be hands-on teaching of advocacy strategies that can result in systems change, expanded and/or improved services, etc. The individual topics for these sessions will be used as examples, as the focus will be on the actual strategies for advocacy. Examples of topics include transportation, aging network services, availability of assistive technology (devices and/or training),  increased availability of vision rehabilitation services, medical services, senior living centers and communities, and emergency services and preparedness. A specific emphasis will be given to advocacy on behalf of planned legislation for furthering vision rehabilitation and related services.

Individual sessions will start with the identification of the topic, enumerating the various barriers associated with the topic. They will offer an outline of some specific advocacy strategies, followed by role playing and inclusion of guest presenters to share their experience in advocacy efforts with each specific topic. The planners envision the following tools/strategies: the use of social media, visibility, and exposure in one’s community, developing partnerships, joining groups with similar goals and aspirations, use of the internet and other digital platforms to identify “who’s who” in an organization to contact, group emails and other communication, group trips to local, state, and federal legislatures, etc.

Pilot Training Project

The group plans to implement a pilot training program in conjunction with the Alliance on Aging and Vision Loss (AAVL) the summer of 2022. AAVL is a special interest affiliate of the American Council of the Blind (ACB). Membership is open to all with no or limited vision or who have an interest in vision loss. Visit AVLNC to stay updated on the progress of this exciting project.