When I first started this blog, it was partially to have a creative outlet and partially to have a platform through which I could focus my advocacy. I was inspired to advocacy because of the number of people who said, “I thought that was just for old people!” when I was diagnosed with rheumatoid arthritis. (Just … no. On several levels.) By the time I was diagnosed, I had already had several situations where it was emphasized that I knew my body better than anyone with fancy degrees, so I was already practicing self-advocacy without realizing that was the term. But what is self-advocacy, and how can we be better at it?
I’m aiming to answer that question in this post, as well as to provide you with tips and resources to help you. It’s a really fascinating topic, and it’s much bigger than I realized when I started writing about it. That being said, let’s get into it.
Self-Advocacy Definition
Self-advocacy is “used as a name for civil rights movements and mutual aid networks for disabled people” and became more widely used during the disability rights movement in the latter part of the 20th century (x). As the word implies, it is about standing up and advocating for yourself.
You might think that this is obvious and doesn’t need to be a whole movement. And that’s because of all the advocacy and self-advocacy that happened in past decades.
SelfAdvocate.Net says, “When you have good self-advocacy skills you can have more control and make the life decisions that are best for you” and not necessarily the ones that make other people happy (x). I’m not talking about people like your loved ones, although hopefully the people who care about you are happy by life decisions that make you happy. I’m talking about people like doctors who meet you for 15 minutes and assume they know everything they need to know about you. I’m talking about people like professors who don’t really care about you as a person because they’re so focused on being annoyed at providing you with accommodations.
Our lives are bigger than just the people involved with our care and we should be able to make the life decisions that we want.
The self-advocacy movement in the US is led by Self-Advocates Becoming Empowered. Their website says that their mission is “To ensure that people with disabilities are treated as equals and that they are given the same decisions, choices, rights, responsibilities, and chances to speak up to empower themselves; opportunities to make new friends, and to learn from their mistakes” (x).
SelfAdvocate.Net says that these are some situations where self-advocacy is useful:
- When you want to be listened to
- When you are being assessed
- When you are making a complaint
- When you are developing or reviewing a care plan
We Need To Talk about the “Disease Warrior” Model
Why Is Self-Advocacy Important?
You might think that self-advocacy is obvious and clear and unnecessary to even mention about, let alone have a whole blog post dedicated to it.
But you need to remember the history of disabled people’s rights in the United States.
In 1990, over 1,000 people marched to the White House in the the quest for the Americans with Disabilities Act to be passaged. As a part of that march, over 60 people left their wheelchairs and mobility aides to crawl up the steps of the Capitol (x).
It was “a physical demonstration of how inaccessible architecture impacts people with disabilities” and it led to the ADA finally becoming law (x).
In 1975, the Individuals with Disabilities Education Act was passed. This law “makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children” (x).
Before 1975, it was not law “to provide children with disabilities the same opportunity for education as those students who do not have a disability” (x).
Living in America has never been easy for people who weren’t white, cis, male, abled, Christian, and straight. Self-advocacy is one way that disabled people have been able to make their lives just a little bit better. It’s the sort of movement that has led to people not treating us like we’re children when we’re adults, whether or not it’s intentional.
About the Americans with Disabilities Act
Self-Advocacy Tips
Now that we’ve talked about what self-advocacy is, let’s talk about what you can do to advocate for yourself.
First and foremost, remind yourself that you know your body and your life better than other people do. Doctors might know your condition better than you, but they don’t know your experience with it. A teacher might know strategies for teaching someone with a learning disability, but they don’t know your experience with your learning disability better than you. At the end of the day, you are the expert in your experience.
My second tip, unfortunately, is that you might have to fight people, so be prepared to stand up for yourself. I don’t mean punch them, but I’m referring to a more figurative fight. You might have to fight your doctors office to get them to believe you or to prescribe a medication you want to try. You might have to fight a professor to abide by the ADA. You get the picture. My best advice is that you should be prepared to fight and hope that you don’t need to do it. If no one needed to fight for themselves, then the disability rights movement wouldn’t exist.
I was in college before there were as many gluten-free food options that weren’t hamburgers without buns. Heading into my senior year, my friend and I were trying to get an apartment-style dorm that had a kitchen so that I could cook for myself. Due to the lottery system, we didn’t get it, so we had a meeting with the person in charge of dorm assignments to try and work it out for my medical situation. I went into that prepared to argue why I needed to have a kitchen, and the guy agreed almost immediately. I was so surprised that he asked my friend, “Did she have a PowerPoint or something?” Friends, I did, in fact, have a PowerPoint prepared. But even though I didn’t need it, I’m glad that I was so prepared because if he hadn’t been the kind of person who understood food intolerances, it would have been a big problem for me.
Back to the tips!
Third, learn to speak the language that the other person knows. I’m not talking about English versus Spanish. Instead, I’m talking about the lingo that the other person understands. When it comes to doctors, for example, you need to be able to describe your pain in a way that they understand. Similarly, when it comes to teachers or school, you need to know the names of the laws that protect you and how exactly they protect you. Speaking the other person’s language will make them respect you more than they would otherwise, unfortunately.
Finally, be prepared to fail and need someone else to help you. I know that this sounds like a bummer and the opposite of self-advocacy. But something that I have learned over the years is that it’s better to succeed at getting what you need but fail at self-advocacy than it is to fail all around. Get the treatment that you need. Get the accommodations at your job or your school. And then regroup before you try self-advocacy again.
Why did you fail the last time? Was it because the other person clearly wasn’t going to listen to you at all? Was it because you were nervous and overwhelmed and forgot things? Was it some combination?
While self-advocacy is great and important, it’s more important for you to get your legally-allowed accommodations.
Living Life with Chronic Illness: Common Problems & Their Solutions
Self-Advocacy Strategies
Now that I’ve shared my tips, I want to talk about some strategies you can use.
SelfAdvocate.Net has a great series of statements on this page that explains how you self advocate. Which makes sense considering, you know, SelfAdvocate.Net is all about self-advocacy.
The Disability Resource Center at UC Santa Cruz has 5 tips for advocating for yourself, which includes practicing being assertive. That makes total sense because a key to self-advocacy is not backing down when someone tries to brush you off.
If you have autism, you should definitely check out the Autistic Self Advocacy Network. They have published a variety of resources on topics like navigating college, transitioning to adulthood, accessing services, and more. Check out their resource library here.
The National Deaf Center has great resources of self-advocacy, and their website says, “an increase in self-advocacy skills contributes to an increased quality of life, sense of agency, and overall well-being” (x).
These are only 2 organizations that have information on self-advocacy. I really suggest searching for “self-advocacy” and your disability because I can’t list all of the self-advocacy resources here. There’s not enough space – which is a great problem to have!
My favorite strategy is to plan ahead what you need to talk about ahead of time. As you guys probably know from my earlier story about the PowerPoint and from following me and/or reading this blog, I’m big on planning. Which means that I have a whole bunch of free downloads for you to help you advocate for yourself. These should help you advocate for yourself in a variety of situations.
My chronic illness symptoms – This 2-page document has several questions designed to help you in your appointments themselves. It has questions about your sleep, your pain, and how your illness(es) impacts your daily life.
Symptom journal – This is a 4-page document that has 4 different type of symptom journals: pain, fatigue, pain and fatigue, and pain and food. Tracking your symptoms like this will help your doctors understand that your symptom description is based on facts or a prolonged history.
Symptom organizer – This 8 page document asks a variety of questions about a wide variety of symptoms. This is most effective when you fill it out a day or so before you go to a medical appointment. This will help you advocate for yourself because you will have all your symptom information written out and pre-prepared. If you get flustered, you can look at your notes. A lot of the questions are the type that doctors ask, so you’ll already have that information filled out!
Chronically Ill Tips: What To Do When a Doctor Isn’t Listening to You
Medical information worksheet – This is based on a document that I’ve had for myself since 2010. It has all the information that medical offices generally ask for (and give you not enough lines to answer the questions on). This includes current medical concerns or diagnoses, past ones such as surgery information, your current medications, any food limitations, a list of your medical professionals, and your family history.
What I want to tell my doctors – This worksheet does exactly what it sounds like: it helps you identify what you want to tell your doctors. It’s 1 page, which is great if you have trouble focusing.
Resume Tips: 5 Tactics for Putting Advocacy on Your Resume
What has your experience with self-advocacy been like?
Like this post? Share it! Then check out these posts:
The Impact of Chronic Illness on an Individual, How Chronic Illness Affects Relationships, Chronic Illness Advice: Resources for the Newly-Diagnosed Patient, How To Actually Rest When You Take Breaks
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
Wow! I am so sorry you were diagnosed with Rheumatoid Arthritis! I 1000% agree it’s important to advocate for yourself and your health – I love the idea of having a journal and keeping your symptoms in a safe place so you can easily self advocate for yourself!
This is such great information! I haven’t heard much about the history of the self-advocacy movement and the rights of people with disabilities. It sounds like a continuing fight, but it’s good to hear there are many resources out there.