Lessons I Have Learned With Years Of Online Advocacy

Disability advocacy is important because anyone can become disabled, and a more accessible world benefits everyone, not just disabled people. As a disabled person, I have been advocating for my needs my entire life because I have had no choice but, within the last seven and a half years, I decided to take my advocacy a little further and share my experiences online to reach more people. It is hard to be an online disabled advocate because non-disabled people often struggle to accept disabled people and view disability as something that needs to be cured. Disability advocacy is not for everyone, because most people are ableist, and some people cannot handle criticism or aren’t comfortable sharing their lives online. Some days it’s hard to be an advocate, but it is so important because we are never going to create change and create a more inclusive world if we stay silent about the many issues affecting disabled people. Disability advocacy is hard, but it has taught me so many things that I didn’t know before I became an online advocate. What lessons have I learned from eight and a half years of online advocacy? In this post, I am sharing a few lessons I have learned from years of being an online disabled advocate.

You constantly have to be educating yourself– Non-disabled people sometimes think that disabled people are experts on every health condition, but that couldn’t be further from the truth, and we are only experts on conditions we currently live with. I know a lot about Spina Bifida because I have had it since the day I was born, and it affects me, but I am not an expert on every disability or chronic illness. There are a lot of disabilities and chronic illnesses I didn’t know existed until I became an advocate, and I know very little about them because I don’t need to have extensive knowledge on every health condition to be a good advocate. As a disabled advocate, I am constantly learning about other disabilities and chronic illnesses from other disabled people because you can’t be a good advocate if the only content you read is your own. I am subscribed to a lot of blogs from disabled people with different disabilities because not all disabled people have the same opinions, and everyone brings something different to the table. Good disabled advocates never stop learning because you will never know everything, and you can’t advocate for your community effectively without educating yourself.

Some people aren’t going to care until disability affects them– When you start advocating for your disability online, you can only hope that people will read about your experiences and try to change. Unfortunately, not everyone is going to want to change, and it doesn’t matter how many posts you write about disability inclusion; some people aren’t going to care until disability affects them. It is frustrating when you do so much work to try to change how non-disabled people view disability, and they still discriminate against disabled people. You do the best that you can to advocate for your community, but you can’t change everyone, because some people are going to continue to be ableist and have no desire to do better. Non-disabled people sometimes think that the only people who need to care about disability are disabled people, and you can’t always change that opinion. It can be very hard to get non-disabled people to understand our perspective, and some people are never going to get it or have any desire to change. Don’t take it personally because you can’t force people to care about disability, and that is something people have to do on their own.

It is important to have boundaries for yourself- When you start posting about your health online, it is so important that you have healthy boundaries for yourself and are very clear about things that you share publicly and things that are kept private. Non-disabled people sometimes will ask you personal questions about your disability that are none of their business because they think it’s your job to tell them everything. It is so important to have boundaries online for yourself because people sometimes think they are entitled to every detail about your health and will cross boundaries. Disabled people do not have to tell you everything about our disability, and it’s up to the disabled on what is shared and what is not. It is okay to ignore questions from readers that you aren’t comfortable sharing because you don’t have to answer every single question that people ask you. Some people may get mad when you don’t answer their personal questions, but that is okay because you need to have boundaries.

Sometimes you’ll feel like a failure – As a disabled advocate, I do my absolute best to help non-disabled people understand what it’s like to be disabled, but sometimes I feel like a failure because people are completely missing the point I am trying to get across and not getting it. As a disabled advocate, I have had to accept the reality that you can’t make someone understand a disability they have never experienced, and that is okay. We do our best to educate people about our disabilities, but at the end of the day, you have to accept that there are some things non-disabled people are never going to understand until they become disabled. One of the hardest things about being a disabled advocate is getting non-disabled people to understand your perspective because you’ll never understand a disability you have never experienced, and there is nothing advocates can do to make you understand.

You will be your biggest critic– Most people who read my blog and enjoy it have nothing negative to say about and constantly remind me that the work I do is important. When I read my own content, a lot of the time, I am much more critical of my work than any of my readers ever will be. You will be your biggest critic, and will have days when you feel like your posts aren’t good enough. Don’t listen to that voice in your head that tells you that you aren’t a good advocate because you are probably doing better than you think.

I makes you a better advocate in real-life– When I was a child, I didn’t really have any desire to learn anything about my disability because my mom was always with me and I didn’t think I needed to learn. Since becoming an online disabled advocate, I have had more of a desire to learn as much as I can about my disability because you can’t be a good advocate for your readers without strengthening your own advocacy. My advocacy skills could still use improvement, but I am a better advocate in real-life because I am so used to advocating online.

Topics that make people uncomfortable make the most impact- When I started writing about my bladder and bowel problems, it made me super uncomfortable, and there was a time when I considered not writing about them. It wasn’t until I realized that topics that make people uncomfortable make the most impact. It will be hard at first, but it is so important to step out of your comfort zone because change doesn’t happen in comfort zones. You are doing a good job as an advocate if you are making people uncomfortable because you’re getting people to think about things in a different way. My job as a disabled advocate isn’t to tell you what I think you want to hear but what you need to hear.

Online advocacy is important, but it is not for everyone because not all disabled people will be comfortable sharing their experiences online, and that is okay. Disability advocacy is important because, although family members sometimes think they are experts, the only true experts on disability are disabled people. I will never stop advocating for disabled people because we need people to advocate of other who are not able to advocate for themselves. Disability advocacy is not just for disabled people, and everyone should be doing it to make life easier for disabled people. Disabled people can advocate in ways non-disabled people can’t, but you don’t have to be disabled to be an advocate. It is hard to be a disability advocate when there is so much disability hate, but it is important work that does make a difference, even if it doesn’t feel like it sometimes. What lessons has online advocacy taught you? If you liked this post, please leave a comment below and share it with your friends.

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