By Shelly Miller
Advocacy. We hear a lot about it, but what does it mean? Are there different types of advocacy? In this article, I would like to share with you some tips about what advocacy is, how you can help yourself, and how to assist your organization in promoting positive change. As a person who has been blind since birth, I’ve had to do a great deal of advocacy work, both in Systems Advocacy, and Self Advocacy. I’d like to share with you some of the lessons I’ve learned.
The general definition of advocacy is actively supporting an idea or a cause.
My journey with self-advocacy began early in life as I was the only mainstreamed student who was blind in my school. I, along with my parents, had to advocate for my right to participate in gym class and to have all my textbooks in Braille.
As I grew older, I was blessed to meet wonderful role models including my itinerant teacher, now called a Teacher of the Visually Impaired, and wonderful people from the American Council of the Blind. Advocates such as M.J. Schmidt and Marlaina Lieberg were excellent people to meet while I was in my teens.
My next journey into advocacy was when, as a sixteen-year-old, I obtained my first guide dog. I had very few problems with Access, but when they arose, I exercised my rights. I researched how to inform business owners in a knowledgeable, non-confrontational manner.
Then, it was on to college where I joined disabled student organizations that focused on advocacy and education.
I was 25 when I started my first “real” job at an Independent Living Center outside of Buffalo New York.
This is when I began to learn many things about advocacy, how it works, and the best ways to implement action towards group and individual goals.
Systems Advocacy is advocacy that effects a group of people. Some examples would include, Braille menus in restaurants, wheelchair access to buildings, or receiving discharge plans and other materials from hospitals in accessible formats. This advocacy is the type which PCB uses to accomplish change and impact members’ lives.
Individual advocacy issues may only involve one person in a specific situation. For example, I recently had to self-advocate with the Pennsylvania Bureau of Blindness and Visual Services as I was not receiving adequate service.
I will continue on in this article by offering some tips and suggestions regarding self-advocacy, and how it can work for you. In a follow-up article in the next newsletter, I will discuss Systems Advocacy, and offer ideas about how you can help your group or organization advocate in an assertive, calm manner with positive outcomes.
First, I would like to discuss presentation. Clearly when someone feels as if their rights are being compromised, or someone feels they are being discriminated against, that brings up feelings of anger and frustration. Take a breath before reacting. It may be self-advocacy you are working, but remember that people, (rightly or wrongly) tend to get a first impression which sometimes bleeds in to other interactions with people of our own disability, or another disability. If you make a favorable first impression, it may have some effect on the outcome.
Next, be informed. Find out if there are any laws, policies, or plans which give credence to and support your position. For example, when dealing with BBVS, I found there was a State Plan which supported my agenda, as well as The Client Assistance Program which assists persons who have an open case with them. I had some familiarity with these things as I had assisted many people with similar issues while working in Independent Living. If it is a restaurant issue, or an issue of public accommodation, Title II of the Americans with Disabilities Act, and Section 504 of the Rehabilitation Act of 1973 are places to go to find the information you need.
Thirdly, document your interactions with the entity you are dealing with. Log phone calls and what was discussed, and any agreements which were made. Keep track of any written correspondence such as letters and emails. If the need arises, you can reference an earlier conversation or email.
Finally, if you are able, contact any local advocacy organizations, such as PCB chapters or Independent Living Centers to see if they can assist you. They may be able to provide resources and referrals if they can’t help directly. They may also offer workshops on the ADA, and self-advocacy which may assist you should you encounter another situation along the way. If you are in the Pittsburgh area, there are no Independent Living Services at this time. The State Dependent Living Council is working on establishing a new center in our area.
Lastly, be diligent! Keep an open line of communication between yourself, and the people/person you are dealing with. With BBVS, I communicated with my counselor, her supervisor, and her supervisor. I contacted them weekly for progress reports on resolving my issue. I used the proper chain of command and would CC emails, so everyone would be on the same page. If you don’t use email, provide copies of your correspondence to all relevant parties.
Stay positive and try not to be discouraged. Advocacy isn’t always fun; however, it is necessary.
Part 2 of this article will be a bit shorter as some of these tips and suggestions work for systems Advocacy as well.
There is a happy ending to my story. I am starting a training program in the field of hospitality in September. I am receiving Orientation and Mobility training, and I received a technology evaluation. I found that calmness, documentation, perseverance, and presentation aided me in getting a positive outcome, and established a better relationship with the agency as a whole! Stay the course, and advocate! You will get the job done!