Getting Involved: Advocacy

Posted by Nurse Linda in Life After Paralysis on June 10, 2019 # Advocacy and Policy

It can be a challenge to become involved with activities for just about anyone. Many of us are not naturals at joining groups without knowledge of who is involved and how it works. One of these unknown sorts of activities is advocacy. If you are of a certain age, you might think of advocacy as sit-ins or marches, but a lot has changed since those days. Advocacy does not mean adversarial.

An advocate is a person who supports a cause or idea. This can be accomplished in a variety of ways. The easiest method of advocacy is living your life to improve your cause. This can include just being you or educating people in your immediate circle about your issue. More advanced advocacy is to challenge other people’s beliefs either by acting on your own or with others. You can advocate in your immediate community, or on a national or international level.

There are some college degrees that can be earned in community organization and advocacy as well as many advocacy classes that are relevant to degrees in different topics of study. However, advocacy is often and sometimes best learned through self-education. Living with a chronic illness can be one of the best educations for advocacy on that issue. People readily accept the thoughts of someone who has living experience on specific topics.

Individuals with spinal cord injury can become natural advocates for concerns related to the condition. A person might want to advocate for improved healthcare, funding, their specific disease, accessibility, secondary conditions, improved mobility, job opportunities and the list goes on. Perhaps you are interested in being an advocate for all topics of SCI. Just about any topic that is of interest to you can be your topic of concern.

There are many ways to become an advocate. You do not need to have any special education. Experience is a terrific way to become involved as your life experience speaks to your knowledge. People who experience a situation or condition have extremely valid points of view. If you have lived just one day with a spinal cord injury or with someone who has a spinal cord injury, you have valuable information that can help other people with spinal cord injury as well as people who do not to learn about the experience and needs.

Some people elect to start an organization on their own. This can be quite complicated. You need to have a purpose statement clearly defined, objectives and goals. Being specific about what you plan to do is essential. The clearer you can be about your planned organization will let people know if they would like to join in your efforts. To state that you want to improve healthcare is a vague purpose as people will make up their own interpretation. To state you want to improve the home healthcare of individuals with spinal cord injury in your community by education of providers is much clearer. Always provide who, what, where, when, why and how.

If you plan to collect funding for your organization, you need to have a legal form filed for non-profit organizations called a 501(c)(3). This will include the purpose and plan of your foundation. An attorney can help you get started. Specifics about how you will collect funding and how the funding will be dispersed must be declared. The law is very strict about collecting funds without a specific plan. Account statements of money taken in and how spent have to be completed. These must match the donor’s statements on their income taxes.

By the same thought, before you join or donate to an organization or foundation, be sure they are a registered organization. The 501(c)(3) document lets you know your donation is going to a recognized and monitored group. Otherwise, your funds might just be going directly to the sponsor which may or may not be used toward the purpose of the organization.

Starting your own organization can be quite daunting. If you search the web, you will probably find organizations and foundations already in existence that match with your advocacy desires. There might be some in your community. Others will be state-wide, national or even internationally known. Advocacy organizations are extremely interested in having people of their community provide input.

When seeking organizations to join, remember that you are interested in being an advocate who is a person that works for a cause or an idea that you believe. Sometimes people confuse advocacy with being a lobbyist who is a professional person that is paid to represent the beliefs of others. Lobbyists are paid to express the opinions of others while advocates are usually not paid as they represent their own thoughts. Advocates rarely have their expenses paid even if they are representing an organization at a meeting or at an appointment with a government official.

If you are not sure how you would like to become an advocate, start simply. You can find opportunities within existing organizations or foundations. If you have a spinal cord injury from a disease, look at the web page of that disease’s organization. Most disease based spinal cord injury organizations have well-developed web pages with education and advocacy. The Multiple Sclerosis Society, American Heart Association and Transverse Myelitis organizations are just a few examples of representative groups.

The Christopher & Dana Reeve Foundation has many opportunities for advocacy. One of the easiest possibilities is to sign up for government alerts. The Foundation monitors governmental bills and proposals that affect those with spinal cord injury. You can sign up to be notified and they will send you an email about governmental issues that are pending. You can easily electronically sign a professionally composed letter about the issue. The more constituent responses to an issue, the more your elected official will know the will of the people. If you disagree with an issue, just do not sign or send the letter.

Other possibilities are posting on Reeve Connect. This is an effective way to communicate information that you have discovered. It is an opportunity to advocate in the community to help others find solutions to their concerns based on what you have accomplished. If you post a question or thought, others can respond to you. The See Us campaign includes thoughts of people about SCI and how they would like to be viewed. This another way to change the way people interact with each other.

Quality of Life Grants are available through the Reeve Foundation for fellow non-profits who would like to improve life for individuals with paralysis. In my community, a group started a theatrical company to educate the public about people living with chronic conditions. They perform at schools, churches and community centers and are funded by the Reeve Foundation’s Quality of Life Grants. Others have started sports programs. Past funded activities provide a wide variety of community options.

Fabulous advocates for individuals with spinal cord injury were Christopher and Dana Reeve themselves. They built their advocacy over time. At first, statements and appearances led to advocacy for individuals with spinal cord injury, then to individuals with mobility issues and on to a movement to improve healthcare funding coverage for all people with chronic issues. Dana was an advocate to include spouses and families. We know the organization and its advocacy program as it is today, but this was developed over time and continues to improve the lives of individuals and families.

There are so many opportunities to advocate for any issue that is of interest to you. It might be in spinal cord injury or it might be fundraising for research or care. The more information can be dispersed to improve the understanding of issues of spinal cord injury, the better our society becomes.

Pediatric Consideration: Some children want to become advocates and do so through opportunities at school or in their communities. Parents can help with this activity to encourage their civic understanding.

Pediatrics is an area of spinal cord injury that is typically represented by parental advocacy. Areas to consider include school education, mainstreaming, accessibility, and research to extend to the pediatric population. In my area, there was one school that students who have mobility issues had to attend because it was accessible. This caused students to be educated outside of their neighborhood, away from friends and far from home. One parent advocated for their child and changed this entire policy. Now, all schools in the district are accessible. Indeed, one person can change the world.

--Nurse Linda

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.