By Terri A. Lewis, PhD
Editor’s note: Terri A. Lewis, PhD, is a regular contributor to National Pain Report and is involved with the Rally Against Pain meeting that is occurring this today in Washington D.C. National Pain Report ran an article about this rally, to which she submitted the following update in the “comments” section, which we believe warrants its own article.
Welcome to the first gathering of individuals and families who are challenged by chronic pain. Whatever the experience that brought you here, we are joined by a common experience – injury or illness, changed status, the need for competent and sustainable health care appropriate to your injury or illness, and the need for reliable community resources.
I want to use my time to address the issue of ‘advocacy.’ What is it? How do we use it?
The first question after the onset of illness or injury is generally “What do I do now?” Along with this is the dawning recognition over time that you don’t know what you need to know to effectively navigate the system issues that you’ve been thrown into. Rarely do you have an understanding of the injury or disease that requires ‘instant expertise.’ So, I want to address this in two ways – the focus on the beloved individual who has been injured or experienced the onset of illness, and the family, care partners friends and community systems that have to be mobilized to advocate on behalf of the individual as they adjust to their altered status.
The experience of an injury that leads to a psychological or physical disability is similar to enduring a mourning process and that some equate with the loss of a loved one through death; The mourning process can involve adjustment to the disability the person experiences and may progress through a series of recognizable stages or tasks - shock, denial, anger/depression, and adjustment/acceptance. The types of advocacy skills that we cultivate and employ are specific to different needs. As importantly, the models through which medical services are delivered and the goals we set for recovery are wholly different depending on the stage of adjustment.
These stages are expected, but they are not orderly or neat. People with disabilities, especially those with new disabilities, go through these stages at their own paces and some might skip whole stages entirely. A difficulty exists when the person has trouble with resolving one of the stages or becomes, ‘stuck.’ When this happens, further progress towards adjustment and acceptance is hindered. Often, becoming stuck is a matter of system failure or processing the person through the wrong health care model of recovery coupled with inadequate advocacy approaches. We use our advocacy skills to unstick what’s not working.
The one thing we rarely talk about or recognize is that individuals do not operate in isolation. They are surrounded by family, friends, and community who are affected by the changed roles imposed by illness or injury of a family member or friend. This change requires adaptation of roles and responsibilities and imposes whole new roles for advocacy. But we rarely acknowledge or address the importance of this as important for recovery of the entire family. During the time it takes to move from the states of shock and denial to adjustment and acceptance, we are also adapting and incorporating the advocacy skills necessary for family adjustment. In short, the family also goes through these stages parallel with their family member and their ability to move on requires learning new self-efficacy behaviors we associate with the process of advocacy. And that is why you are here.
A number of different types of advocacy exist. The strength of each advocacy type depends on how well the individual, familys’, group or organisation’s advocacy efforts to meet the key elements expressed in the definition of advocacy. The types of advocacy have been categorized in different ways. There are five types of advocacy that we are often challenged to learn on the fly as we move through a traumatic event. Just as the individual moves through the stage of denial, families also move right along with this – but unlike recovery from the injurious event, the family structure is injured by a change to internal roles and responsibilities. All of our energy is focused on the individual, often to the exclusion of addressing the development of knowledge and skills necessary for the family to adequately support and advocate for their individual and their own needs. I think we need to talk about this so lets discuss the types of advocacy and how we can employ them systematically and effectively:
Self-advocacy refers to an individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights. It involves making informed decisions about your medical care and taking responsibility for those decisions. Self-Advocacy is learning how to speak up for yourself about decisions that affect your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination. It is very affected by the model of medicine and our own levels of confidence to engage with the discussion.
Individual Advocacy is a form of informal advocacy, wherein parents, spouses, brothers and sisters, relatives, and friends take on advocacy roles and speak out to persistently advocate for those who are vulnerable. They address the unrecognized and unseen, and struggle with injustices with little or no support. These individual advocacy efforts can and do last many years. Solo efforts can isolate individual advocates from their communities by the very nature of their efforts, particularly where the issue is controversial or perceived as detrimental to the wider system or environment in which the issue is placed. Chronic pain and access to health care is such an issue. These advocacy efforts by individual people on behalf of other people need to be supported, nurtured and protected. Individual advocates benefit from being connected to others doing advocacy; to share the effort, to seek support, or to develop a collective response. That is the benefit of social media platforms where individual advocates can easily link with advocacy groups for information resources and further contacts. The limitation of social media however is that it may not deliver the specific skills building necessary to assure effectiveness. Voluntary community based organisations are another form of individual advocacy that pay staff to advocate for individuals. Some offer training at the local level.
Parent/Family advocacy is concerned with advocating on issues that affect the person with a within their family. The focus is generally on the needs of the person with a disability but some parent advocacy focuses on the needs of family unit first. While parents have substantial needs for support and resources, when we talk about parent and family advocacy I refer to this advocacy by groups aligned around common needs to address the needs of their family members.
Citizen advocacy is a community based movement that aims to recognize, promote and defend the rights, well being and interests of people or specific issues. You are doing this here today. It does so by finding and supporting caring, responsible citizens who make long-term voluntary commitment to make a positive difference in the life of a persons who are challenged by “at risk” situations within their communities. Each citizen advocacy relationship is unique. The citizen advocate may for example, engage in a protégé friendship, and be authorized by affected individuals to represent specific experiences and opportunities, serve as a spokesperson or to offer protection from abusive processes. The citizen advocate may serve in a ‘helper’ role, as an at large member of the community whose concerns are aligned with specific community needs expressed by individual members of the community.
Systems advocacy is primarily concerned with influencing and changing the system (legislation, policy and practices) in ways that will benefit people as a group within society. Systems advocates will encourage changes to the law, government service, program policies and community attitudes. Usually systems advocacy does not do employ individual advocacy. To do so can cause conflict around the use of resources, focus and purpose.
The advocacy toolkit contains a number of key elements for our use. Advocates must operate with minimal conflict of interest, and where they exist, they are disclosed and available for review. The advocate operates not from a position of personal benefit but from a position of sincerely held interests. Advocates function by speaking out, acting or writing to promote the well being and social justice needs of a person’s welfare. Advocacy requires something referred to as “vigour of action” represented by depth of feeling in advancing the cause or interest of another, taking a lead, initiating, managing a sense of urgency, and doing more than what is done routinely to challenge the community.
All activity is not advocacy – it is important to keep that in mind. Not all activities are productive or effective. Not all persons are effective advocates for their ‘causes.’ As an advocate you need to be prepared; to bend over backwards to pursue and achieve even small, ordinary gains. You need to commit to becoming an effective and informed spokesperson for your issues. Instead of only writing a letter to the editor or responding to a facebook post, it may require you to also pick up the phone and make an appointment with your elected representatives. Complaining is not the same as advocating. Instead of registering your concern once and claiming that it didn’t do any good, you need to develop an up close and personal relationship with people who are charged to manage specific systems and manage change.
The question for each of us here today, is what will we do tomorrow? I encourage you to take a number of very specific steps:
- Decide how you want to advocate and make a commitment to become the most effective you can at the strategic method you choose – self advocacy, individual, family, citizen, or systems advocacy.
- After you have staked out the action you are going to employ, become informed and take responsibility for acting on that knowledge, becoming an expert for the problems you want to address.
- Ask for help from the advocacy community.
- Share your what you learn. Remove barriers. Play well with others.
- Contribute to the kind of data collection that improves citizen and system advocacy and results in improvement to public policy. Patient generated research is critical to moving the needle.
- Support other advocates in their efforts.
- Develop a personal relationship with your community leaders and elected officials. Invite them into your homes and illustrate for them the gravity of your concerns.
Thank you for your attendance here today. It took an enormous commitment to overcome all of the difficulties associated with your attendance. We are unorganized, but we are organizing. The stakes are too high to step back from the precipice of this broken health care system. Your VOICE IS IMPORTANT. NOTHING CHANGES UNTIL WE DO! Our loved ones are depending on us. Be well, enjoy each other’s company, and take the time to enjoy everything that is free in beautiful Washington, DC!