Whether you have had a disability or chronic illness for a long time or you’re new to facing health challenges, you may have heard of the term “self-advocacy.” But what exactly does it mean? And what kinds of self-advocacy skills can help you get through life with a disability or chronic illness? As a middle-aged woman who has had cerebral palsy since birth, I’ve spent a lifetime developing self-advocacy skills. I’m not perfect and I’ll always have more to learn, but I hope sharing what works for me can help others who are just starting down the path.
What is self-advocacy?
Before we can talk about self-advocacy, we have to define it. In its simplest terms, self-advocacy means speaking up for yourself. It means understanding your needs and helping other people to understand them too. Self-advocacy also means looking beyond yourself and supporting the rights of other people with a disability or chronic illness. The self-advocacy movement began among people with intellectual disabilities in Sweden in the 1960s and spread across the world. I recommend watching the Netflix documentary Crip Camp to learn more about the disability rights movement in the United States.
Being a self-advocate can be hard. Unfortunately many people in this world are still ignorant about disability and hold on to negative stereotypes. They have low expectations for what people with disabilities can do. But many other people are kind and want to help, they just don’t know how. By developing self-advocacy skills, you can communicate with all kinds of people to get your needs met and achieve your goals. Here are 12 self-advocacy skills you can develop to help you along the way.[wpsm_titlebox title=”Self-Advocacy Tips” style=”2″][wpsm_toplist][/wpsm_titlebox]
Self-Advocacy Skill #1: Believe in yourself.
The first step in becoming a self-advocate is believing that you are worthy of respect. Having a disability or chronic illness does not mean your life should be limited or lesser than that of other people. Yes, our health conditions themselves can sometimes slow us down or prevent us from doing certain things, but we are limited far more by systemic discrimination in businesses and government programs, as well as negative societal attitudes about disability.
I was born disabled, so this is the only life I’ve ever known and will know. I believe that has helped me want to make the most of it. But if you’ve developed a disability or chronic illness later in life, you may still be in shock and grieving the life you had before. It may be hard to believe that life could be good again. You may know other people with disabilities and illnesses who spend most of their time at home, who don’t get the medical treatment they need, who haven’t been able to get a job or find a romantic partner or participate in hobbies and activities they enjoy. That is not inevitable. And it is never OK.
Even if some of those things describe your life right now, it doesn’t have to stay that way. But you can’t start fighting until you believe there is something to fight for. I promise, things can get better and the battle is worth it.
Self-Advocacy Skill #2: Believe in your human rights.
I have occasionally been accused by ableist non-disabled people of having an “entitlement mentality.” I consider that a compliment, because I’ve only sought the same opportunities as people without disabilities. I believe healthcare, food, and safe housing are human rights everyone should be entitled to, even if their disability prevents them from working. And those of us who can work shouldn’t have to fear losing the supports we need if we earn a decent living.
Always remember: You have the right to live in an accessible home and community. You have the right to an education. You have the right to employment opportunities and to be paid at least minimum wage. You have the right to be treated with kindness and respect by friends, loved ones, and strangers alike. You have these rights because we all do as human beings, regardless of our disability or chronic illness.
Self-Advocacy Skill #3: Don’t settle for less.
There is a pervasive assumption in society that if you have a disability, you should be grateful for whatever crumbs are thrown your way. You’re expected to settle for less in life. It’s far too easy to buy into that mindset, but to be an effective self-advocate, you must fight it both in the world and within yourself.
I was raised to fight for my rights and not settle for a lesser quality of life. I have my parents, particularly my mother, to thank for this. She was tough and she never backed down, and I try to be just like her. Thanks to the lessons she taught me, I’ve led a fulfilling adult life, living in my own home, working or attending college/grad school, traveling around the country, and having personal care assistants to help with daily tasks. I have some privilege, for sure, but none of these things were handed to me on a silver platter. I had to self-advocate to get them and keep them. I still do.
It’s important to remember that not settling for less includes more than just accessibility, healthcare, and disability services. It also applies to the way people treat you and the people you choose to have in your life. As a young adult I was a strong self-advocate when it came to accessible buildings and transportation, but inside I still felt like I wasn’t good enough.
I had low self-esteem, especially regarding my body and appearance. I was afraid no one would ever love me or accept me as I am, and so I made mistakes that led to nearly losing the life I had fought so hard to build. Although I had some wonderful friends, I also stayed friends with people who took advantage of me. I stayed in an emotionally and financially abusive relationship because I believed I could never find someone better.
I am far from alone in this. Nearly every disabled person I know has been abused by a partner or caregiver, often more than one. Sometimes other people with disabilities can be abusive too. If you have experienced abuse, please know it’s not your fault. Abusers take advantage of those they perceive as vulnerable, and they must be held accountable for the harm they cause. But the more respect we have for ourselves, the less likely we will be targeted by abusers — and we’ll be more likely to spot them sooner and remove them from our lives before then can ensnare us in their trap.
Self-Advocacy Skill #4: Find your advocacy style.
I have a piece of bad news for you right now. If you have a disability or chronic illness, you have to become a self-advocate. It’s not just a matter of thriving, it’s a matter of surviving. It doesn’t matter if your personality isn’t suited well to it, if you hate confrontation or you’re painfully shy or anxious. Unless you win the lottery and can just buy your way into everything, you’ll have to (metaphorically) stand up for your rights. But that doesn’t mean you can’t develop your own style of self-advocacy that works for you.
My mom was and remains my inspiration when it comes to self-advocacy. She never backed down and she had a reputation in the community as a bulldog for disability rights. I’ve always wanted to be as strong as her, but I’m just not; I’m too sensitive. I fall somewhere between her and my father, who is a peacemaker and very willing to compromise. When I try to self-advocate in his style, I fail because I back down too easily in negotiations and lack his persuasiveness. I’ve been trying to find a balance all my life, but ultimately I’ve learned to use my strongest skills, writing and communication, to start out polite but firm and escalate the situation as needed.
To succeed as a self-advocate, you’ll need to develop your own style. Do you communicate better in writing? Are you a good public speaker? Are you a direct action person who would occupy your Senator’s office to demand change? Are you good with numbers and statistics, and can you use them to prove your point? Think about your strongest skills and how you can harness them as an advocate for yourself and others.
Self-Advocacy Skill #5 Do your research.
I have found that the most important thing to bring with you into any self-advocacy situation is the facts. Learn about the laws that protect your rights. Learn about the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and IDEA. Learn about the Olmstead Supreme Court decision and your right to live in your own home and community.
It’s also important to do in-depth research on any program or service you are applying to use. Having a detailed understanding of a program can allow you to make the most of it. You may even become more knowledgeable than the program representatives in your area, which is useful in case they try to deny you something which should be available to you.
For example, let’s say you are applying for personal care assistant services through Medicaid in your state. Before you even apply, you should research the program to find out what kinds of tasks it covers and how they determine the number of care hours you will get. Then you can write out a schedule based on your worst health days, detailing each activity you need help with and how long it takes. You can also use this information to have your doctors / healthcare providers write statements on your behalf, in which they affirm that you need assistance to the restroom a certain number of times per day, require a special diet, etc.
Self-Advocacy Skill #6: Be polite, clear, and direct.
It’s important to remain professional when advocating for yourself as a person with a disability or chronic illness, especially when dealing with businesses or government programs. Stay as calm as you can, and don’t swear or insult the other person. Often, those opposing you are doing so based on their own prejudices and negative feelings surrounding disability. You may not be able to open their minds, but take the high road by respecting them even if they don’t respect you.
Even if you are being perfectly reasonable, you may be accused of being rude or pushy simply for asserting your rights. People working in the social services fields, especially for the government, frequently engage in tone policing of people with disabilities. They often expect us to be deferential and grateful for inadequate services. If you go into the process knowing your rights and doing everything you can to get the most out of a program or service, they may perceive you as demanding rather than well-informed. Don’t back down. Stick to the facts, be direct and honest, and then if the situation has to escalate further in the future, you will clearly be the one in the right.
Self-Advocacy Skill #7: Communicate in writing or record everything.
This one is fairly self-explanatory, but if you communicate in writing or otherwise have a recording or record of conversations, you can use it later if your rights are not being respected. This can be easier said than done. As human beings we want to trust each other and take other people at their word, but if we get it on paper/digital we can hold them accountable if they don’t keep their promises. I have made and continue to make this mistake many times.
One good method of accountability is to set due dates for projects or information. For example, if you have hired a company to make disability modifications to your vehicle and you need it back by a certain date, have them put that date in the contract. Otherwise it’s too easy for them to delay and say the vehicle isn’t available when you need it.
Self-Advocacy Skill #8: Be the squeaky wheel.
Yes, this applies even if you don’t use a wheelchair. Being the squeaky wheel means being persistent. If you’re waiting on someone to get back to you, don’t let it go on for weeks. Give them a couple of days to respond, then try again. If they still don’t respond, try again the next day. Set a recurring reminder on your phone so you don’t forget. Use different methods of contacting them — if they are not responsive to one, then try another.
Have a relative or friend contact them if they are not being responsive to you. It’s a sad truth that in our world, having a man make the phone call is often most effective. If a disability-related company or service has ignored my calls and messages multiple times, and I ask my dad to contact them, he will usually get a response within 24 hours.
Self-Advocacy Skill #9: If you are denied the services you need, appeal.
It’s pretty well-known that programs such as Social Security Disability routinely reject most applicants the first time they apply. They do this because they know many people will just accept the rejection and they will save money. Therefore, the key to getting access to the programs and services you need is not to give up. I know it feels like a kick in the gut when you need support and don’t get it. Take a day, let yourself process those feelings and then keep going.
In the case of SSDI/SSI, you can hire an attorney to help you go through the appeals process. For other programs, reach out to your local independent living center or state disability rights organization to see if they have advocates who can help you. Facebook groups can be a source of advice from other people who’ve been through the same struggles.
Another tactic programs use is to approve you for services at a much lower level than you actually need. This is common when applying for Medicaid home and community-based services such as in-home care. You may need eight hours of personal care assistant services each day but they only gave you four, and claim that is all you really need. Do not accept this. Appeal.
Every state has an appeals process you can use if you feel you are not receiving enough support to live safely in your home and community. I recommend seeking out an advocate to help you prepare for the hearing, and to accompany you if possible. Make sure you have medical documentation and detailed explanations of why the current level of support is inadequate for your needs.
Sometimes lack of documentation is the reason you were not given enough support in the first place, but other times the state may just be making up excuses to limit services. At the appeal, if you go in prepared, your documentation will be given much more consideration and your chances of winning are high.
They are counting on you to give up. If you fight, eventually it becomes more trouble to continue opposing you than to give you what you need.
Self-Advocacy Skill #10: Use the carrot-and-stick method.
If you’re trying to get someone to do the right thing when it comes to disability inclusion/accessibility, it helps to start by being nice. Yes, we shouldn’t have to, the ADA has been around for 30 years after all, but it’s also true that many people, including business owners, are just clueless. They want to solve their accessibility issues but they don’t know how. They might be afraid it will cost a lot of money. If you educate them and give them the chance to change, they often will — and if they don’t, they can’t claim ignorance when you change tactics and hold them accountable.
Here’s an example of how to use this method. Let’s say you are trying to book a private room at a restaurant for an event to be held in four months. You have found a restaurant that sounds great, but then you discover they have one step at the entrance. You can call the restaurant and explain that you were hoping to book your party at their establishment, but you have guests with disabilities and they won’t be able to get in. You would be happy to help them figure out how to ramp their step in time for the party.
If they are willing, help them get a ramp installed, and then book your event. If they refuse, you now have an ADA discrimination case. You can file a lawsuit or a complaint with your state civil rights commission or the Department of Justice.
Self-Advocacy Skill #11: Use social media to your advantage.
Social media has helped to level the playing field when it comes to disability advocacy. It’s easier to connect with businesses, and most at least claim they want to hear from you. You can use the carrot-and-stick method above to resolve accessibility problems with businesses using social media. Reach out to them first in an attempt to resolve the problem. If they are not responsive or cooperative, that’s when you start going public.
Businesses hate bad reviews because they know people read them and make decisions accordingly. Inaccessibility is more than sufficient justification for a bad review. For example, if you tried to go to a restaurant only to find they had a step at the entrance, or the servers were rude when you asked whether certain dishes contained something you’re dangerously allergic to, other customers with disabilities and chronic illnesses need to know that. If a medical equipment store or accessible vehicle dealership is selling defective products, you could save someone else’s life or prevent them from being defrauded by sharing your experience.
Sometimes businesses will agree to solve the problem in exchange for you deleting the bad review. This is an excellent solution, but make sure they have made the changes and will commit to them long-term before you delete. You don’t want the business to make things right for you but then continue harming other people.
Self-Advocacy Skill #12: Practice self-care.
Self-advocacy is a lifelong journey, and it’s different for each person. Despite your best efforts, sometimes you won’t be successful. When things go wrong, try not to blame yourself. We self-advocates (especially Americans) are fighting to get the support we need from a broken health care and social services system, in an ableist society that often doesn’t see our value. So be kind to yourself and practice self-care. Listen to some relaxing music. Stream a favorite TV show or movie. Take a long bath or shower — whatever helps you recharge your batteries. Hang in there — you’ve got this!