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Many people find it difficult to "advocate," or speak out in support, for themselves. To some people, it seems self-centered to draw attention to their needs; others are uncomfortable "making waves," and still others might feel like they are getting someone in trouble or making them angry when they ask that their needs be met. But your health is at risk if you don't advocate for yourself. For example, Brenda remained on a steel plank for eight hours waiting for an MRI; by that time, she had formed a red mark. She complained about this "medical misfortune" later, but she learned a valuable lesson the hard way: Brenda now evaluates her needs, picks out the most vital ones, and then advocates strongly with medical staff to make sure they help her reach those goals. For Howard, the cost of not advocating for himself was far more devastating: for 12 hours, he suffered in his bed in a community hospital with congested breathing, fever, an impacted bowel and vomiting green bile, but his nurses would not call the doctor. Finally, Howard's sister literally started screaming for help, which got him immediately transferred to the intensive care unit. Unfortunately, it was too late for Howard: he had a heart attack in the ICU and died five hours later. The point is, it's not only acceptable, but crucial to become a self-advocate.
Letting people know about your needs does not have to lead to an angry conflict; you can advocate for yourself in a clear, polite way. Judy, for example, organized the patients in her ward to question why they were frequently served spaghetti, which is difficult for people with impaired movement in their arms and hands to eat. The result was that the hospital changed their menu, and Judy and others were able to feed themselves at mealtimes. Judy also roamed the halls in her wheelchair looking for available staff when she had reached the end of her recommended sitting time, so that she wouldn't stay up too long and risk forming a pressure ulcer (which means the same thing as "pressure sore" or "bedsore"). By advocating for herself, Judy remained as independent as possible and avoided getting pressure ulcers. Dave also avoided pressure ulcers by talking with his doctor about a sitting tolerance program that was scheduled to start very soon after surgery, which Dave worried might cause his wound to reopen. His doctor agreed with Dave's opinion, and the sitting tolerance program was delayed until the wound healed more.
There are some people who believe, "What's the use of speaking up? No one will listen to me anyway." Perhaps surprisingly, this is not true. In fact, a recent study has shown that even one meeting or talk (about 1-hour long) to an individual or a group about disabilities can be enough to increase their knowledge and improve their attitudes toward people with disabilities 1. This is pretty powerful evidence that it is worth it to advocate for yourself. At the very least, there's nothing to lose by trying, and you will have the satisfaction of knowing that you represented yourself and your needs. Even more importantly, you may find out when you speak up for yourself that people truly did not realize there was something you needed that you were not getting. A study done by researchers in England found that people with disabilities commonly reported they needed equipment, care attendants, therapy or information about maintaining good health that they had not received, while the same people's doctors reported that they believed these patients were satisfied that they had all the medical support and information they wanted 2! Sometimes a lack of communication is all that stands between a person and better medical treatment; in such cases, self-advocacy could help people get the care they need.
The idea that people need to advocate for themselves is nothing new. The ancient Middle Eastern philosopher Hillel asked, "If I am not for myself, then who will be for me?" His point was that if you don't stick up for yourself, there's no guarantee that anyone else will, either. If you don't let people know there is a problem, they may have no way of knowing that you need something or something is wrong.
The second question that Hillel asked was, "If I am only for myself, then what am I?" In other words, advocating for your own rights can inspire you to help others, too. Among our participants, both Chris and Alley became active volunteers in organizations that advocate for the rights of people with disabilities, and Chris even turned his job into a paying position.
Hillel's final question was, "If not now, when?" When it comes to your health, having the attitude that "it can wait" can be a mistake that leads to bigger problems. For example, Mitch formed a small pressure ulcer on his left hip while he was recovering from surgery on his arm. He ordered an air mattress to help heal this small, closed ulcer, and didn't even show the ulcer to his doctor during his next appointment for his elbow. The mattress never arrived, Mitch never followed up to find out why, and the result was that the ulcer on Mitch's hip opened, becoming much more serious. But Mitch learned his lesson: when a nurse helped him order an air mattress and an air pad arrived by mistake, Mitch advocated for himself by refusing the wrong item and calling the rehabilitation hospital. This time, the result was that the right bed arrived at his house just a few days later. Self-advocacy made all the difference!
One way that people advocate for themselves is starting a website to share educational information and personal experiences. The United Spinal Association, whose motto is "Expanding opportunities for veterans and all paralyzed Americans," offers an online self-advocacy kit, "Taking Action", which has step-by-step advice on how to speak up for yourself and addresses and phone numbers of organizations that can help you. Usted puede ver "Tomar Acción", una Guía en Español (de la "United Spinal Association") de autoayuda, paso a paso para convertirse en un autodefensor y marcar una diferencia.
Max J. Starkloff, who had a spinal cord injury, was a long-time advocate for independent living opportunities. Probably one of the best-known self-advocates in the disability community is the late actor-director Christopher Reeve, who received a spinal cord injury in a fall from a horse in 1995. The Christopher and Dana Reeve Paralysis Resource Center continues to report on medical research and personal stories of living with a spinal cord injury, as well as providing information helpful for daily living, such as dealing with finances and working with care attendants. These self-advocates, as well as other people who speak out on behalf of themselves and others with disabilities, believe that independence has nothing to do with a person's need for caregiving or medical support, but that it has to do with a person's spirit. As many advocates for the rights of people with disabilities believe, if you take control of your life and make your own decisions, you are independent 3.